EDITORIAL PANEL : Chad T . Rodgers , MD , FAAP | Elena M . Davis , MD , MPH | William L . Mason , MD | Michael Moody , MD | Pramod K . Nelluri , MD | J . Gary Wheeler , MD , MPS
Receiving Children with Autism into Primary Care
MAYA LOPEZ , MD ; JILL FUSSELL , MD ; ANGELA SCOTT , MD ; and CHAD RODGERS , MD , FAAP
GD , a 28-month-old healthy boy , returns for follow-up after being seen by the developmental specialist . Mother states , “ Doctor , they said GD has autism . I just don ’ t know . I ’ ve always fed him healthy things — no preservatives .” She seems distressed and confused . “ He ’ s smart in his own way . Do you think he can go to college ? Will he be able to live on his own ?”
Parents often face an unexpected and radical change in their lives when their child is diagnosed with a developmental disability . Parents may be experiencing different emotions , including guilt and grief over their child ’ s condition , relief that a diagnosis has been made and worry about their child ’ s future . As GD ’ s primary care physician ( PCP ), your role includes : reviewing evaluation results with parents in a culturally sensitive way , providing timely referral to services while serving as the child ’ s medical home , supporting family and coordinating care . 1 To be effective and understand what the family needs , PCPs need to assess how the family is adjusting at every encounter .
GD ’ s mom is obviously going through many emotions at this point . We can imagine the tug-of-war that is raging in her mind . Is this diagnosis real ? Is this my fault ? What ’ s my child ’ s future ?
Concrete answers to these questions may not be what is most useful to the family at this time . Parents need a helping hand to rebuild the vision they have for their family , one that is founded on an understanding of normal development and a vision of a hopeful future for their child . Interviews conducted with parents of children with disability indicate that the majority recognize the need for a strong belief in their child and their child ’ s future , an optimistic outlook , and a realistic view and acceptance of the disability . 2 To help parents understand appropriate developmental expectations for their child , give them developmental charts , such as those found at no cost on the Centers for Disease Control and Prevention ’ s Learn the Signs . Act Early website ( cdc . gov / ncbddd / actearly / index . html ). They are available in printed format or accessed as Milestone Tracker Mobile App , downloadable on iOS and Android devices .
Provide concrete information on interventions that have optimized developmental potential and independence in children with similar needs . Knowing about specific recommendations and action steps can help families appropriately channel their desire to “ do whatever it takes ” to help their child . Creating this plan together can solidify the relationship with the PCP as the family ’ s ally on their journey .
Parents derive more benefit from meeting and interacting with other parents whose journey is similar to theirs , compared to typical supports ( e . g ., social worker , doctor ’ s office ). The impact of parent-to-parent connections is described as multidimensional : parents realize they are not alone , they can talk to someone who understands and can get a glimpse of a possible future for their child . Eventually , parents feel able to help other parents and this decreases their own need for support . 3
Encourage families under your care to contact the Arkansas Autism Resource and Outreach Center ( aaroc . org or 1-800-342-2923 ) to connect with other families and with community resources . AAROC is a family-led , statewide charitable organization providing parent-to-parent support , advocacy , education and training for families of children with autism spectrum disorder ( ASD ).
84 • THE JOURNAL OF THE ARKANSAS MEDICAL SOCIETY VOLUME 115