Autism research, particularly that concerning adults, appears to have hit a critical stagnation point. This halted progress is not just concerning—it is downright frustrating for many in the community. Advocates and individuals like myself feel an immense fatigue, borne from the ceaseless effort to shed light on this issue to both the medical field and the broader public. Too often, there’s a prevailing myth that children with autism can simply “outgrow” their condition or that a miraculous cure might be found during their youth. This misunderstanding can lead families and caregivers to overlook the importance of preparing for the lifelong journey of living with autism.
I often engage in speaking events aimed at addressing the future challenges these young individuals will face as they grow older. My talks also cover the important adaptations that can be helpful for handling upcoming life changes more smoothly than past generations. However, despite these efforts, these messages frequently seem to fall on deaf ears or are outright ignored.
The overwhelming dismissal by a system clinging to outdated perceptions—that autism is a static, unchanging condition defined only by its manifestations in early life—is alarming. It’s becoming increasingly clear that a unified uprising against these obsolete views is necessary. We need to challenge and overhaul the system to reflect that autism is a dynamic spectrum, with evolving needs that require ongoing, tailored research and support throughout an individual’s lifetime. This rebellion isn’t about conflict; it’s about demanding a shift towards continuous support and recognition that the spectrum does not remain the same from childhood through adulthood. This is a critical step towards genuine understanding and improvement in the quality of life for all individuals on the autism spectrum.
This perspective raises a significant issue that resonates with many older adults dealing with autism. As they articulate, there remains a monumental gap between the supports provided and the actual needs faced by this demographic. It is not just a gap in resources, but a chasm in understanding and empathy from the broader medical and support community.
One can empathize deeply with the frustration expressed. To be consistently told to use outdated or irrelevant strategies must feel dismissive and disheartening. While medical professionals and support networks might rely on established methods, these often do not translate well to the nuanced challenges faced by older adults with autism. This demographic experiences a natural evolution in needs and perspectives, which seems sorely overlooked in current approaches.
Moreover, the call for a “wind of change” is a poignant reminder of the urgent need for systemic reform. The plea for approaches that are not just revamped but radically transformed to accommodate the specific changes and challenges faced by adults is compelling. The stagnation in innovation or adaptation in support mechanisms is alarming because it affects the quality of life of so many.
As the strain continues, many find themselves in a kind of survival mode, developing their own adaptations to navigate through everyday life. While these self-created solutions are a testament to human resilience and ingenuity, they are, as noted, often incomplete. They are stopgap measures rather than solutions, highlighting the broader issue of a systemic failure to address needs comprehensively.
Bringing about the requisite change requires an acknowledgment of these lived realities and the disparities between support services and actual needs. Only then can we begin to craft solutions that are not only effective but also compassionate and tailored to the real-world complexities of aging with autism. The time is now for this overdue reset, to finally prioritize and effectively support the evolving needs of older adults living with autism.
Why is it that the NIH and the NSF and other research bodies toss millions of research dollars over and over at the adolescent and pre-teen researchers repeatedly yet balk at even trying to give anything to anyone willing to do solid and worthy research into what is really affecting us as adults. It boggles my mind at the sheer stupidity and arrogance they posses to assume we are a static and non-changing thing that is never honed or shaped by the environment or experiences that make up what we have become. I know that I am further beyond what I was as a youth and yet I face so many new things that I do not have answers to and the medical professionals keep spouting the same crap over and over in what seems to be some wrote method of trying to placate me into falling into line and being a sheep that is supposed to spin in the wind happily while my life disintegrates.
It is time to rebel and the time to do it is now, stand up for yourself and demand more. You deserve to know what is happening to you and you deserve to understand yourself better than you do now and from a well researched and knowledgeable perspective that can only come from the very people that are holding the purse strings. We must rise up and make our voices heard, we cannot stand by and let what is happening to us happen to the next generation or to the generation after those as we can bring about this change and stop this now. We owe it to the youth of tomorrow to improve their lives and bring to them answers that we do not have and may not ever have but we owe them the opportunity to have that chance at understanding of what they are about to become. It is our duty to do that, we have been privileged to live a full life of many experiences and we cannot let them die with us. We must pass them along and share our successes with the next generation to help them succeed and go even further than we have, it is our job to make sure the youth of tomorrow is in a better position than we are today. We cannot rely on their doctors and parents to do it as they are in denial in such a dark way it is scary beyond belief. We must open their eyes and show them what potential they have and what wonderous things they can become. We owe them that as adults with autism. We must rebel and now is the time to do that.
