Working with Families of Deaf or Hard of Hearing Children who have Autism Spectrum Disorder

The issue

goodbye

Relatively little is known about the needs of the families of children who are deaf or hard of hearing (DHH) and have a diagnosis of Autism Spectrum Disorder (ASD). Working with these families can pose unique challenges for professionals, as information about how best to engage and support these caregivers is limited.

What we know

Familial responses to a having a child who is DHH and has ASD are informed by a number of factors including, but not limited to:

  • Caregivers’ experience with the diagnostic process
  • Personality attributes of the caregivers
  • Characteristics of the particular child (e.g., temperament, severity of ASD)
  • The amount and type of social support accessible to the caregivers
  • The extent to which family needs are understood and met by the professionals working with them
  • Caregivers’ appraisals of their parenting experiences
  • Availability and quality of the early intervention and/or ASD-specific treatment(s)
  • Caregivers’ perceived benefit from the supports/services they receive
  • Caregivers’ sense of empowerment to make decisions

Evidence suggests that early identification of and treatment for ASD are important in influencing outcomes. Yet, relative to children with typical hearing, the diagnosis of ASD in DHH children is often delayed. Family members report “having a sense” that the developmental trajectory of their DHH child is atypical, yet differences in development are more likely to be attributed to the child’s hearing status.

Difficulty finding effective resources to support the child and having to “fight for services” are common experiences for caregivers of children with this dual diagnosis. Research suggests that family members may be overwhelmed by the lack of information.

While caregivers can and do report positive experiences in relationships with their DHH+ASD child and their parenting journeys, many also find the experience isolating. Preliminary work in this area suggests that family-to-family support might play an important role in both fostering acceptance of the child and helping the caregivers to feel understood.

A number of interventions/treatments have been implemented in working directly with hearing children with ASD. Small case studies have explored their use with DHH children. This preliminary evidence suggests that DHH child may benefit from similar support.

Families need to be aware that interventions for ASD will need to be adjusted for the population of DHH children in order to optimize their effectiveness. Importantly, the language used in providing interventions must be accessible. Further, visual attention deficits, common among children with ASD, can make it even more challenging for DHH children to attend to information that is presented visually.

What we don’t know

The ASD diagnostic process has been found to be highly frustrating for caregivers of DHH children. Family members express concern that measures used to assess for ASD did not seem to “fit” their DHH child. Communication challenges can further complicate the process. Clinicians familiar with ASD but not reduced hearing may be more cautious in diagnosing a DHH child with ASD and more likely to attribute the child’s behavioral presentation or communication profile to the child’s hearing status. Given the paucity of professionals trained in working with both ASD and DHH populations, caregivers are often left questioning the accuracy of diagnoses.

Even when we can be assured of the accuracy of the diagnosis, we do not know the effect that delayed diagnosis of ASD in children with reduced hearing will ultimately have on their ability to benefit from targeted therapies.

Parent training (evidence-based interventions for teaching caregivers to manage behavioral challenges in children, such as recognizing antecedents and consequences, preventing disruptive behavior, etc.) and parent education about ASD (e.g., diagnostic criteria of ASD, educational planning, etc.,  without explicitly addressing behavior management) have shown promise in reducing ASD-related behaviors in hearing children, particularly with respect to improving expressive language skills. We do not yet know with certainty how to best adapt such parent-focused interventions for families whose children have reduced hearing.

Implications

The social support needs of caregivers are variable; some parents will appreciate emotional support, others will benefit more from informational support or direct support, such as providing assistance with particular tasks. Understanding about how caregivers of DHH children with ASD conceptualize ‘support’ and aiding them with goal-setting are important roles for professionals.  To the extent possible, professionals will need to use what they know about best practices in working with DHH children and be mindful about how to adapt interventions targeting ASD, particularly with an eye toward ensuring that the child is able to access the support.

Posted on July 7, 2016 by
Amy Szarkowski
Deaf and Hard of Hearing Program
Boston Children’s Hospital
Amy.Szarkowski {at} childrens.harvard.edu

Further reading