As I was fortunate enough to have had employment with good healthcare benefits, I did not have to face many of the challenges in navigating the healthcare system that autistics regularly encounter. Nevertheless, because of my involvement with the autism community over the past quarter century, not to mention my own recent experiences as a senior on the spectrum, I am confident in my understanding and appreciation of these issues to have informed opinions about them. Furthermore, I addressed some of them during my participation in AASET (Autistic Adults and Other Stakeholders Engaged Together – www.autistichealth.org).
Compared to the situation at the time of my diagnosis in late 2000, let alone during my childhood and later youth, improvements in diagnosing ASD, along with increased public awareness of such, means that an autistic person under a certain age (i.e., young enough for an ASD diagnosis to have been available in their childhood) will likely have been diagnosed by the time autistics need to access the healthcare system; as such, any autism-related difficulties navigating it can be addressed, at least in principle. However, the exact opposite is true for older adults such as myself. Consequently, these two categories will need to be considered differently. In the former case, procedures and practices can be formulated and applied whenever an identified autistic accesses the healthcare system; in the latter, an individual needs to be recognized as such before this can happen. Since most older adult autistics have not been identified, let alone diagnosed, this presents a conundrum for a large segment of the autism community – some form of massive ASD screening for older adults will be needed during healthcare intakes.
All of this is further complicated by the fact that numerous comorbid conditions which are neither part of the ASD syndrome nor included in its diagnostic criteria are more common in the autism community than in the general population. These include psychiatric/psychological as well as purely medical ones. It would be extremely helpful, if not essential, for healthcare providers to know that a patient under their care is more susceptible to these conditions than is usually the case so that they can examine or have them tested for such.
Awareness of Autism and Comorbidities Is Essential
Probably the best-known instance of autism comorbidity involves gastrointestinal issues, which are not included among the traits for ASD, and explanations for their connection to such are highly speculative (to the best of my knowledge). I lived with these in my childhood and throughout my life. Still, I did not fully appreciate their significance until I asked the attendees if they had any such concerns at a support meeting that I facilitated. Even with previous knowledge of the issue, I was surprised when three-fourths of them raised their hands! Clearly, this is a very common problem. Again, healthcare providers need to be aware of this when treating an autistic patient and examine them thoroughly for such. Furthermore, this should be done by a physician with expertise in this area and, when warranted, by a board-certified gastroenterologist.
Other comorbidities involve neurodiversity and mental health. ADHD is so common in the autism community that, for many years, it was often given as a misdiagnosis for ASD, as was OCD (which is easily confused with the repetitive behaviors of autistics). Learning disabilities such as dyslexia and dyscalculia are also common. Psychiatric illnesses (e.g., bipolar, psychotic, and schizophrenic disorders) sometimes occur in autistics as well. Once again, autistic patients should be evaluated for these whenever there is any indication of such and if warranted, referred to an appropriate specialist.
While some of the above comorbid conditions are purely organic, many psychiatric/psychological conditions are the result of living with the challenges of autism. For example, deficits in basic life skills can cause substantial anxiety in daily living. Also, difficulties with social skills can result in significant depression, not to mention the social anxiety so common among autistics. In the most extreme cases, prolonged social isolation and bullying can result in post-traumatic stress disorder (PTSD) and even suicidal ideation. All these conditions are common among autistics. Healthcare providers need to fully understand and appreciate that autistics very often face, or have faced, such situations and that these can be the results. They then need to determine if any of them exist and, if so, what actions need to be taken and what specialists or treatments they should be referred to.
Most autistics have some form of sensory sensitivity (often more than one), and many of these can be triggered by any number of medical or clinical procedures. Chemical sensitivities, including adverse reactions to certain medications, are also not uncommon. Yet again, providers need to be aware of these issues and be on the lookout for them when treating autistic patients.
Finally, autistics as a group are not (to put it mildly!) known for our good health habits. For example, our eating habits often leave much to be desired. This can be due to selective eating issues (as is the case with me) or simply bad food choices. In any case, our resistance to change, particularly concerning personal habits, can make it extremely difficult to modify these patterns in favor of healthier ones. Also, autistics sometimes have an aversion to physical activity, especially if they are poor at sports (as so many of us are) and have been ridiculed or worse for it. Again, our resistance to change can make adopting good exercise habits very difficult indeed. As always, healthcare providers need to be made aware of these issues and must understand that an autistic patient is likely to have poor health habits. They can then be treated in an appropriate manner, either by lifestyle improvements (if and where possible) or by addressing conditions resulting from poor habits (e.g., obesity, diabetes, etc.).
Older Adults Face a Byzantine Nightmare
The vast majority of autistics who entered adulthood prior to improved diagnostic criteria for ASD and public awareness of such may not even be aware that the autism spectrum exists, let alone that they might be on it. Consequently, the healthcare system that autistics need to access whenever a medical situation arises has no knowledge that such a patient might be living with autism, let alone take this into account when planning treatment. Given the well-known challenges and deficits of autism, particularly among older adults, the possibilities for things to go wrong are too numerous to even consider.
This is all exacerbated by the fact that, as autistics get older, we have a greater need for the healthcare system than we did when we were younger and generally in much better health. Furthermore, medical and health issues affecting older adults, especially senior citizens, tend to be more unusual than those typically faced by younger patients. These, in turn, require more specialized care than common problems, which any competent provider can readily treat. Identifying appropriate medical specialists is more complicated than finding primary care practitioners because medicine has become so specialized that a suitable provider needs expertise in a particular condition and not just in their general medical specialty. The upshot is that navigating the healthcare system for an older adult becomes much more complicated than it is for a younger person.
Finally, the complexity of health insurance and, consequently, of the healthcare system itself has literally exploded, especially during the past decade. What used to be an annoyingly difficult bureaucracy at times has turned into a byzantine nightmare of horrendous proportions. It has become extremely difficult to find a specialist who can treat your particular condition – insurance company websites list doctors according to general specialty (cardiology, gastroenterology, etc.) rather than subspecialty (which you need to know to find an appropriate provider). On top of this, it is often very difficult to determine whether a provider is even in your network, which can literally change from one day to the next. I had one experience in which the doctor’s receptionist put the burden on me to find out whether he was in the network for my specific plan since his office could not make that determination!
The above three factors have created the “perfect storm” of an unnavigable healthcare network. This is especially true for most individuals in either an HMO or some other plan that requires all your providers to be in a given network. Not only are there numerous insurance companies, but each of the major carriers has literally dozens if not hundreds of different plans, each having its own provisions and provider networks. This is especially the case for affordable healthcare marketplace “Obamacare” plans (which I had for several years) and so-called Medicare Advantage plans (which my friend currently has).
When I was treated for a severe sinus condition several years ago, it was not enough to find an ear, nose, and throat (ENT) doctor (all of which were grouped in the same category on the provider network list) – I needed to identify one who specialized in sinuses and, as it turned out, sinus surgery. Luckily, I was able to locate an excellent doctor who found substantial polyps and performed surgery to remove them. Thankfully, it went very well, and I had a good outcome, but finding this doctor required nothing less than herculean labor on my part, along with the help of my primary care doctor and his entire staff (I am not exaggerating!).
While all of this can be daunting for anybody trying to navigate this system, it is especially horrific for autistics. We famously need some form of systemic order as well as specific and detailed information to deal with most situations; the current healthcare system, in many instances, provides neither of these. I shudder to think that, if it was such an ordeal for me to deal with all of this, despite my having access to very good healthcare and some ability to figure out the system (with considerable effort), what an impossible situation this presents to the many autistics who are not nearly as fortunate.
Looking to the Future
As much as the situation has (or at least can be) improved for younger and diagnosed autistics, there is still much that needs to be done. The path is somewhat clear and what is needed within the realm of possibility. For older and undiagnosed autistics, however, the situation is far more dismal. As with many other issues, the need to diagnose (or at least identify) adult autistics becomes paramount. It would also help to address the many shortcomings for autistics of our healthcare and insurance systems!
Karl Wittig, PE, is Advisory Board Chair for Aspies for Social Success (AFSS). Karl may be contacted at kwittig@earthlink.net.
I am blown away. This is a great article and it goes a long way towards providing the adult perspective I asked for in my comment on the children’s article. Thank you.