Hukama means rapport.

Autism is an invisible disability that affects the entire family. Families who have an autistic child fear discrimination, face a lack of community understanding and are often judged critically. Any of these factors keep families from routine appointments and community events that are openly welcoming to the general public.

Imagine a snapshot in time of a family, a mom and her two sons Peter and Sam, walking into a busy dentist’s office to obtain routine care. Peter sits down and begins to read a magazine, he is 9 and autistic, Sam plays with his tablet that he brought from home, he is 7 and neurotypical.

While we don’t think any professional and their staff would intentionally discriminate, how a family perceives acceptance, or lack thereof, defines their service experience. Mom checks in, reminding the receptionist with whom she had spoken with when she made the appointment and disclosed that Peter, who is now quietly reading a magazine, is autistic. The receptionist peeks into the waiting room but can’t tell which child Peter is because his disability is invisible. Clearly uncomfortable, the receptionist refuses to keep Peter’s appointment, advising that they will not treat an autistic patient. Meanwhile, the dental assistant swings the interior office door wide open and calls out Sam’s name. He welcomes Sam warmly and invites him in. Peter was never given an opportunity to create a rapport. With the Hukama process in place, this would not have happened.

From an early age children learn social skills by example, observing their peers in order to understand their social environment. For some children, following that expected social norm is easy. Others struggle to grasp the behavioral nuances expected of them in a particular environment, unable to conform or provide the expected responses. These individuals find themselves having to socially camouflage, that is, they suppress, or “mask,” their autistic behaviors in order to appear to fit in, often from an early age.

Masking does not mean the individual understands the nuances of the situation or is comfortable in the environment. Instead, it means that the individual is going through the motions regardless of their level of discomfort. The inability to conform to expected responses and the drain associated with masking prevent the individual from engaging fully with their community. Creating a rapport with an autistic child requires the professional to better understand the child’s needs and responses and to create an environment where masking is not the basis of the relationship.

Quite often, young children are unaware of their diagnosis. But whether a child has been informed of their diagnosis is relevant only to the family unit. Disclosure to the child may be immediate upon diagnosis, even at an early age, or withheld until the child is thought to be developmentally and intellectually able to comprehend the information.

For the child diagnosed at a young age, immediately disclosing the diagnosis name might make the term commonplace for them. Being part of the family unit’s vernacular may reduce the stigma associated with both the word and the diagnosis. However, others believe that disclosing the diagnosis to a young child is meaningless at such an early stage of development.

The child who is diagnosed at an older age may be more capable of understanding the words and their meanings. Even so, caregivers may still be cautious about disclosure, fearing that it will cause undue emotional distress or be a source of manipulation.

We recommend asking the caregiver in advance if the child is aware of their diagnosis. While the actual disclosure of a diagnosis is not a part of the rapport being developed between child and professional, knowing if disclosure has been made may help you guide the relationship.