Uniquely Human: The Podcast

This podcast has changed my life as a parent to an autistic child (and as a person diagnosed with ADHD). Every time I listen to an episode, I gain new insight for myself and my child. You both truly fulfill the goal of “celebrating and illuminating autism.” And learning directly from autistics in the podcast has been such a gift. thank you thank you THANK YOU!

Neurodivergence demands an Holistic Healthcare Approach Seeking diagnosis for any neurodivergence is Diagnostic Allopathic Medicine is based on the siloing of care between specialists, universal care plans and a type of hierarchical paternalism that relegates the patient to the ignorant and the physician to the knower. Any perception of defiance or authority challenging behavior on the part of physician is quickly seen as noncompliance and therefore the patient loses credibility in their own care. Self identifying as neurodivergent in the attempt to explain any communication errors can place the patient in an even more vulnerable position due to a perceived lack of competency or other underlying biases. All of these factors are a perfect storm for misdiagnosis, maltreatment, invalidation, improper or unnecessary treatments, and combined, can often lead to a snowball effect that is probably behind the sad life expectancy statistics mentioned. The further away one is from “normal” (read white, male, allistic, middle class, literate, heterosexual etc) the more likely the medical model will confound and potentially endanger you. The toxicity of this Venn diagram can’t be underestimated. I’m listening to this as a mother of two vastly different neurodivergent children and late diagnosed ADHD person and I cannot stop agreeing more with everything that is mentioned here. The medical community’s response to neurodivergent concern and needs with invalidation, gate keeping, substandard or even denial of proper care due to strongly entrenched beliefs and practices mixed with unconscious bias is long standing, poorly understood and often completely overlooked even when a patient seems to be in a state of decline or even worse, avoiding care altogether. Instead, the individual is blamed for the system’s failure and inability to flex to the needs of those who do not fit a one size fits all standard of treatment. It is rare to encounter a doctor or a practice that is able to think outside the box and then facilitate care in ways that do not impede the patient’s ability to participate in it. So often one is thrown to the wolves and expected to just figure it out by luck or circumstance. This conversation is so important for parents who have children on the spectrum as well as the adults who may or may not have the self awareness yet, (or have been straight up barred from doing so), to name their unique struggles in ways that do not further shame and dissuade them from being strong advocates for themselves and experiencing true agency over their bodies. I believe strongly that every aspect that fails the neurodivergent community is exactly what has always been missing and excluded from our healthcare system from the start. People tend to forget that our current system was built as an adjunct military branch. It was designed for a hierarchy of authority and knowledge and the patient was never meant to be a participant, but rather as an objectifiable case study. Ever wonder why we have a Surgeon General? Modern nursing derives from rigid religious structures, specifically Catholic nuns. In essence what we have today is a conglomeration of military, religious institutional concepts, and corporate interests which we are meant to trust our bodies and wellness to explicitly to the point where questioning this can lead to real consequences of legal and social liability. The history of western medicine is illuminating and one begins to understand why it has so many modern failings. The public’s perception of medicine as an empathetic, ethically motivated and informed calling is at odds with our for profit, cost cutting model and the accessibility to any care at all is totally divorced from the real needs of society; especially and specifically for those deemed as “different” or otherwise disabled. It’s more than just a matter of relabeling and awareness, it’s also about what we value as a society in general. It’s about human rights and dignity.

Just finished listening to Linda and Barry and Dave and I want to just say WOW! Linda, you are thoughtful, thorough, insightful and eloquent. You listen so well to others and are able to incorporate what they say into a meaningful and connected response. I’m so fortunate to learn from you, and so grateful Barry and Dave invited you on. Declarative Language makes so much sense when I think of how the primary purpose of language is to forge connections.

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