Possible Autistic Vulnerability to COVID-19
This is a complex subject, but I'll do my best to explain . . . .
Over the past 20 years we have made some progress understanding the biological underpinnings of autism, and by extension, ADHD and other related neurodevelopmental conditions. We have long known of links between autism and dysregulation of the immune system. One marker of that is abnormal cytokine levels found in some autistic people.[i]
We don’t know if the immune dysregulation leads to development of different brain wiring, or if our different brain wiring leads to immune dysregulation. It’s also possible there is some factor common to both, making immune dysregulation and autism (in some people) both by-products of some lower level difference. One reason I advocate for basic research is to answer questions like that. While autism itself if not physically life threatening, immune dysregulation is. When the two are intertwined as they are in many autistics, it presents a medical threat we need to address.
As further evidence of immune dysregulation in autistics, we know many of us have co-occurring medical problems that are also tied to immune dysfunction. Those conditions range from allergies and sensitivities to asthma to diabetes. GI problems – one of the most widely discussed co-occurring problems for autistics – also have an immune dysfunction connection. While we don’t know how those conditions are intertwined, the fact that they are – for many people – is undeniably real.
One thing we’ve learned is that autism is a very heterogeneous condition. In other words, at a biological level, there is no one “key to autism.” Rather, there are thousands of things that interact in complex ways to produce the behaviors we call autism. Therefore, while immune dysregulation may be a big issue for some autistic people it may have zero impact for others. We do not know why, or who’s in one group and not the other.
In recent years scientists have worked to understand the connections. One area of focus has been abnormal cytokine response. Cytokines are small proteins used by the immune system. In a 2018 article from Frontiers in Neuroscience, several scientists from the UC Davis MIND Institute describe the connections.[ii] Our bodies contain a number of cytokines; one of particular interest in autism is called IL-6, or Interleukin 6. IL-6 is encoded by the IL6 gene and expressed (created by) white blood cells (leukocytes). It is a driver of fever and inflammation, among other things.
Most lay people had never heard of cytokine responses when that article was published. Anyone who reads about the ways COVID-19 can turn deadly can’t miss the term now. Doctors ascribe deadly lung and organ damage to “cytokine storms” that occur when a patient’s immune system goes wild in response to infection and the body attacks itself.[iii] Some doctors hold out hope for immunosuppressant drugs to combat this[iv]. In the thick of a pandemic, no one knows who might be vulnerable to these cytokine storms, but it stands to reason that one group could be folks whose mechanisms for cytokine regulation are not working properly.
Early in the pandemic doctors observed poorer outcomes in hospitalized people with cognitive disabilities. Most doctors attribute this to the many known reasons[v] that cognitively disabled people have sub-optimal outcomes, but one factor that has not been discussed is the possibility that cytokine dysregulation may an unseen problem, given the percentage of this population that have autism.
In the progression of COVID-19 there seems to be a window during which disease is mild, and then it comes roaring on with respiratory failure (possibly attributed to the body’s immune response). Some doctors have tested for elevated levels of IL-6 prior to onset of respiratory failure, and when it was high, treated with suppressant drugs with very good results.
Are autistic people a group that should be particularly focused on this issue? No one knows, because there has not yet been time to study the issue. Given the uncertainty, and the high risk of death after COVID-19 respiratory failure, autistic people in that position would be wise to ask the question of their doctors. IL-6 levels can be tested in most hospital settings and suppressant drugs are widely available.
There is more and more emerging evidence that sharply elevated IL-6 levels foretell respiratory failure in COVID, but so far no one has speculated who might be prone to this, or why.
There is other evidence that autistic people may be more vulnerable in a general sense. The Adverse Child Experiences study[vi] (ACEs) has followed participants for 25 years and established connections between childhood trauma and adult health problems. Other studies on the impact of trauma show intersections with vulnerability to conditions like obesity or diabetes. Many studies have established that autistic people experience more childhood trauma and live with higher levels of stress. We know trauma can lead high ongoing levels of stress hormones, which can compromise immune function.
Any autistic person who is hospitalized with COVID-19 would be wise to inform doctors that they have autism, and autism may be tied to immune dysfunction, and they may be vulnerable to abnormal cytokine responses as revealed by a test of IL-6 levels. The relationship between other neurodivergent diagnoses (ADHD, for example) and immune dysfunction is less clear but remains a possibility. You should also advise doctors that autistic people may not sense things in their own bodies and may be less aware of deterioration; closer monitoring is advisable.
In this article, I am not proposing treatments. There is no home remedy for this, and nothing you can do today to protect yourself beyond the social distancing steps we are all taking. Instead, I am offering very specific advice about tests and monitoring you can request for a hospitalized autistic person suffering from COVID-19. You should discuss the test results and possible actions with the doctors. I offer this advice because performing such tests may be far from the minds of most admitting physicians yet for some of us it may be a lifesaver.
I wish there were time to test these hypotheses better, but for some of us, the wolf is at the door right now. For others, he will spring tomorrow, or the next day. If we – as a group – are vulnerable to cytokine storms in this situation, the advance knowledge can be critical. The downside – the possibility of wasted tests – seems small.
There is always a risk when suppressing the immune system in a sick person. But the efficacy of that is currently being explored by many doctors treating COVID today; it is not a new suggestion I am advancing. I have written elsewhere about the psychological threat the COVID-19 pandemic presents for autistic people. This possible medical threat is one more thing to consider.
My best wishes to everyone in this difficult time
John Elder Robison
The Immune System, Cytokines, and Biomarkers in Autism Spectrum Disorder, Springer Neuroscience
Anne Masi, Nicholas Glozier, Russell Dale, and Adam J. Guastella
Immune Dysfunction and Autoimmunity as Pathological Mechanisms in Autism Spectrum Disorders
Heather K. Hughes, Emily Mills Ko, Destanie Rose, and Paul Ashwood
[iii] https://www.npr.org/sections/health-shots/2020/04/07/828091467/why-some-covid-19-patients-crash-the-bodys-immune-system-might-be-to-blame
Why Some COVID-19 Patients Crash: The Body's Immune System Might Be To Blame, NPR Health Shot Apr 6, 2020
Level of IL-6 predicts respiratory failure in hospitalized symptomatic COVID-19 patients
Tobias Herold III, Vindi Jurinovic, Chiara Arnreich, Johannes C Hellmuth, Michael Bergwelt-Baildon, Matthias Klein, Tobias Weinberger
People with an intellectual disability vulnerable to adverse outcomes of COVID-19
Ciara O'shea, Trinity College Dublin
Wikipedia article describing ACEs study, partnership of Kaiser and NIH
Comments
The fact that you are walking daily could be the difference for you - that reduces cytokines and increases lung health as you mentioned on FB, John. Thank you for being such a great role model and thinker!
I add the link below to an article that proposes the mechanism by which oral and intravenous vitamin C can help with CV19. The author does not seem to know that intravenous ascorbic acid is used by many and has been since the 1940's. Her paper compares oral ascorbic acid to sodium ascorbate IVs. However, her paper is helpful because she may see the connection between the sometime success of malarial drugs and the action of vitamin C on this disease. I will also give you links to the Shanghai Report, to Eastern Virginia Medical School protocol for ICU COVID patients as well as their advice for prevention. Although I will not add the link I will suggest that your readers look at CITRIS ALI study (JAMA,NIH) that gave an extremely low amount of IV C for four days to patients with ARDS-cytokine storm (this is pre-CV19) and yet had a decrease in mortality on day 28 from 46% to 30%, as well as shortened hospital and ICU stays. Here is the link to the paper theorizing about the mechanism of vitamin C:
https://www.evolutamente.it/covid-19-ards-cell-free-hemoglobin-the-ascorbic-acid-connection/
Here is the link to EVMS: https://www.evms.edu/covid-19/medical_information_resources/#d.en.140202
Dr. Marik's approach is based on the Shanghai "Expert Consensus" as well as the recent discovery that CV19 should not be treated according to the traditional ARDS protocol because CV19 seems to hijack the blood; the blood cannot offload and onload 02 and C02 and thus the pressure from mechanical ventilation might be ill-advised at times.
I wish we didn't have to risk discrimination to get proper care.