Autism Spectrum Disorders- Understanding Parental Pursuit to Access Speech-Language Services in the Indian Context

Background: An alarming increase in the prevalence rate of Autism Spectrum Disorders (ASD) is a major concern for health care providers. Of foremost concern to Parents of children with ASD (PASD) are communication deficits. Accessing appropriate Speech-Language Services (SLS) for early intervention is the challenge. An average of 350 children with ASD seek SLS at the institute where the current study was undertaken. The intention was to understand the delays in reaching SLS, misperception the PASD hold, other obstacles that come in their way to access SLS. This understanding is of paramount importance to demystify misconceptions and develop professional and public education programs.

Objectives: To examine issues encountered by parents in accessing services of a Speech-Language Pathologist (SLP).

Methods: All children with confirmed ASD (n=65) seen in a span of 2 months were recruited for the current study. PASD were asked to fill a questionnaire that was specifically designed for this study. Some of the areas covered in the questionnaire included, age when parents started becoming concerned about their child (AOC=Age Of Concern), nature of these concerns, Age of Diagnosis (AOD), Age Of first visit to SLP (AOSLP), details of the hearing status, diagnosis and guidelines provided by the medical fraternity.

Results: All families belonged to middle economic status (MES). The mean age (in months) of AOC, AOD and AOSLP was 28.28±7.50, 35.00±15.29 and 43.32±23.26 respectively. The mean time gap (TG in months) between i) AOC-AOD was 7.09±14.06), ii) AOD-AOSLP was 8.32±18.70, indicating an overall delay of about 15 months (15.05±21.99) from AOC to AOSLP. In spite of this long delay in reaching out to Speech Language Therapy (SLT), 72.3% of the children were admitted into a normal school (no special services for a child with ASD) by the age of 48 months, indicating that parents were insistent on the child receiving academic inputs. Some of the common misconceptions and challenges included: 60% of PASD had the notion that speech will develop naturally later in life; 38.5% and 76.9% PASD believed that medicines and TV/mobile apps respectively, would help the child speak. In 44.6% cases the family doctor assured that the child had no significant problems and would improve as the days pass by. Though none of the children had a hearing loss (based on informal screening protocols), 75.4 % underwent an audiological evaluation. Not responding to name call was the single largest reason for referral and evaluation (78.75%). Three major concerns which parents had about their child included, the inability to speak adequately, followed by poor eye-contact and not following commands (75.4%, 29.2%, and 21.5% respectively). Findings are further discussed.

Conclusions: The current study has revealed a definite delay in the child receiving SLT and identified significant misperceptions PASDs hold. Delay in identification and rectifying the misperceptions can be addressed by sensitizing the medical professionals and through public education programs for parents and caregivers.