After a child has been identified as being at risk of a developmental delay or disorder, what is next for parents and physicians?

• Physicians: be supportive to the family; be proactive for the child; follow up.
• Parents: research; use Early Intervention sessions as opportunities to learn; explore home-based and other therapies; find parent support groups and other local resources; and above all, stay involved with your child.

After a physician refers a child to Early Intervention or local school district, and refers the child to appropriate specialists for diagnostic testing, their job is not complete. Rather, to ensure the best chances of a child’s success, this stage is only the beginning of a collaborative effort between pediatricians and parents.

A referral is not enough; follow-up is essential. Parents must contend with an unfamiliar diagnosis, a new landscape of services and treatments, as well as a range of complex emotional considerations. Without support, encouragement, and follow-up, some parents may not be able to move on from “why me?” to “what’s next?”

What can a physician do next?

A physician needs to schedule a follow-up appointment after a screening and referral. It is crucial to continue to assess not only a child’s developmental progress, but the family’s progress overall:

• How are they doing?
• Have they noticed any changes in their child?
• Were referrals followed up?
• What sort of program is being established?
• What sort of therapies?

And, after asking these questions of the family, a physician should inquire, “How can I, as a professional, be more proactive?”

While every family needs encouragement, some families need extra help. Dr. Frances Glascoe observes, “Certainly many parents are educated or resourceful, have access to the Web and have the energy and well being to advocate effectively for their children. But that also means that there are some families that are less able to do that.”

With encouragement and resources, most parents will assume the role of an able advocate for their children.

Dr. Robert Wharton offers an important reminder: “We can’t forget that when we tell parents that their child has this [developmental] disorder, it’s absolutely devastating to them. They’ve lost their anticipation of who their child is going to be. ...And now they’re faced with the fact that they don’t know what to anticipate, and we often don’t either. And so, it’s forming a contract with them to say, ’OK, it’s an uncertain future. We’re going to help you. We’ll help your child, but we’re going to walk through this uncertainty together.’

What can a parent do next?

Once a child has a diagnosis, it may seem like the question marks about a child’s development have been removed, and substituted by an exclamation point. “What is wrong?” may become “Autism!” But parents have to move beyond the name and begin to learn the rules of the waiting game. Many programs and specialists have long waiting lists, and progress often seems slow; however, parents can do many things in the meantime.

• Use this time as an opportunity to study about the disorder. Read, research, and re-invigorate.
• Start your research with Autism Navigator, Autism Society, and Autism Speaks
• Contact the Autism Society of America (ASA) to start your research.
• If your child is receiving services from Early Intervention, use those sessions as opportunities to learn. How is the specialist engaging the child? What sort of activities are they doing, and why? What might you be able to do at home?
• Explore home-based therapies that involve parent participation, such as “Floortime” (ICDL).
• Seek speech/language, occupational, physical, or other appropriate therapies. Often, individual therapies (as opposed to programs, centers, or some well-established specialists) have shorter waiting lists.
• Find a local parent support group. You don’t have to “share” if you don’t want to; it may be helpful just to listen. Experienced parents can give you resources, guidance, camaraderie, and above all, perspective. Many parent groups also host training sessions, which enable you to build upon your natural skills.
• Above all, become more involved with your child. While you may not be able to “cure” your child, your direct participation can play a critical role in promoting your child’s healthy neurological development. Get down on the floor and play: blow bubbles; try a tickle; or, just sing and dance. Children with developmental disorders, like all children, need loving and engaged caregivers to open their minds and hearts to the world.

As Dr. Karen Levine, a developmental psychologist, observes: “Parents become the best therapists in many ways. They’re the ones who have the strongest connections to the children. And once parents are able to see how much they can connect and help their child develop, I think that’s the most therapeutic moment for a parent who is grieving...It’s like, “Oh, I can have an influence. I can help my child develop. I can bring my child out’.”

What can a concerned friend or family member do next?

“Knowing what to say or how to help parents who have recently had a child receive an autism diagnosis can be tricky business. Emotions are running high for all involved. Do you try and cheer the parents up? Do you offer your condolences? Are there right and wrong things to say?”

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