The reporting cycle for the IACC is complete and now, delivered. I’m livid at the result.
This is my public comment submitted this morning, and it should be self-explanatory. Link to the report is at the end.
As I reflect on the reports and initiatives presented yesterday, I am left feeling frustrated and disillusioned by the lack of attention to adult and senior autism considerations. While there are efforts to strengthen community partnerships, improve economic opportunities, and promote data equity, it is clear (based on the available data and research presented) that prioritizing only childhood and early adult cohorts for individuals with Autism Spectrum Disorder (ASD) is and will continue to lead to concerning outcomes.
Decades of this gap in focus have already had negative impacts on older populations, people with ASD aging into their senior years, and late diagnosis cases. For instance, the text highlights that CDC’s NHIS data collection continues yearly, allowing for annual prevalence estimates of various developmental disorders. However, it fails to adequately address the needs of older individuals on the autism spectrum.
Continued, inadequate focus on late diagnoses and seniors is creating a looming crisis for tomorrow’s aging population with ASD. This is further substantiated by the reported findings of CDC’s SEED Teen follow-up study, indicating that adolescents with autism were 90% more likely to have additional mental health issues compared to children in the general population. The extrapolation here is clear and it is irresponsible to permit it to continue.
I find it particularly galling that there is a dearth of programs and services designed specifically for adults and seniors living with autism. Studies have shown that individuals with autism face significant challenges as they age, including difficulties in finding employment, maintaining social connections, and accessing healthcare services (National Autism Association, 2020). Yet, despite these findings, it appears that the needs of adults and seniors with autism continue being neglected.
Furthermore, I am disappointed by the absence of dedicated chapters or sections addressing adult and senior autism considerations within the report. While there are mentions of intersectional identities and underserved communities, there is a glaring omission when it comes to the unique challenges faced by older individuals on the autism spectrum.
Current research efforts and support infrastructure are severely lacking when it comes to addressing the needs of older individuals with ASD. This shortsighted approach not only disregards existing concerns among these populations but also jeopardizes their well-being as they age. As a responsible society and healthcare system, we should prioritize the development of comprehensive services for all ages impacted by ASD to prevent or mitigate an ongoing and escalating set of negative consequences.
As someone who is of this overlooked cohort and is passionate about ensuring that individuals with autism receive the support and accommodations they need throughout their lives, I urge those in positions of power to take immediate action to address this critical issue. It is not enough to simply acknowledge the needs of adults and seniors with autism; we must also provide inclusive programming, accessible services, and foster a culture of understanding and support for these individuals.
I implore policymakers, researchers, and service providers to recognize the gravity of this situation and work towards creating a more equitable and inclusive society that supports individuals with autism at every stage of life.
Full report at: https://iacc.hhs.gov/publications/report-to-congress/2023/