April is Autism Awareness Month, and with a record 1.5 million American children – that’s one out of every forty – being diagnosed with autism, what is the Federal Health IT community doing to improve outcomes? Mike Farahbakhshian helps us solve the puzzle one piece at a time.
Happy April, Meaningless Useketeers! For those of us in the Northern hemisphere, Spring is in full bloom. After a grim, dreary, monochrome winter, we finally get to see signs of life and color. Grass is green! Trees and flowers are blooming in a rainbow explosion! Birds are singing in a cacophonous symphony! Squirrels and other woodland creatures are scurrying about in a blur of motion! Pollen is – ACHOO! – assaulting our immune systems!
In short, April is an assault on the senses, an overload of sensory input. In a sense (ha!), April’s color-sound-smell-sneeze-bomb is the closest a neurotypical person will get to experiencing what folks on the Autism Spectrum Disorder (ASD) experience. Given that ASD rates are up by over 15%, it’s fortuitous that April is Autism Awareness Month. Together, we can see what advances in Health IT can do to improve the quality of life for people on the spectrum.
But First… Controversy!
The 800-pound gorilla in the room regarding ASD is Autism Speaks. Almost anywhere you look regarding ASD advocacy, you will find Autism Speaks somewhere in the mix. Their “puzzle” iconography has become synonymous with ASD. However, Autism Speaks is very controversial among people with ASD. Many people with ASD are hopping mad, for several reasons:
- Autism Speaks does not have proportionate representation on their board of people with ASD. Only two out of twenty-six people on their board have ASD.
- Autism Speaks caters primarily to neurotypical parents of children with ASD, more so than adults with ASD themselves.
- ASD is a very diverse spectrum. On one end are people with severe communication, cognitive and sensory/stimulus issues who may have extreme trouble navigating in the world. On the other end are folks who would have been diagnosed with Asperger’s, before Asperger’s was rolled into ASD. Treating such a wide range of neurological approaches as if it were one condition is neither scientifically, nor ethically advisable.
- Autism Speaks spends a significant portion of its budget on advertising and fundraising, and not so much on “family services” – which is what the families of ASD children, or adults with ASD, have been asking for. (Source: 2017 Autism Speaks Audited Annual Financial Statement)
- Until recently, Autism Speaks has included in its mission statement that it was searching for a cure for autism. The majority of Autism Speaks money went to research and development to “cure” autism, which was viewed as an erasure attempt by many with ASD. To their credit, Autism Speaks has changed their mission statement to read:
“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.”
Even with the “cure” language removed, some of the “awareness” campaigns paint ASD as a life-destroying, marriage-killing (which, by the way, has been proven is not true) monster with no cure.
Understandably, this sort of “awareness” has elicited quite a bit of backlash. However, Autism Speaks has also funded a significant amount of genomic research and funded many grants into the origins and mechanisms of ASD. So, while many people with ASD may be rightly aggrieved by Autism Speaks, the resulting science does give incredible insights into the causes, comorbidities (such as depression and seizure disorders) and implications of ASD. This is important because children with ASD are twice as likely as children with other disabilities, and almost four times as likely as children without disabilities, to have unmet medical needs. As the rest of the country is slowly, staggeringly transitioning from fee-for-service to value-based care, the research that Autism Speaks funds helps point out areas where outcomes are not improving.
Now I’m a thoroughly mediocre author of an industry rag fluff column, with no formal science education. My only repertoire is bad puns, hot takes, self promotion, and fart jokes. With all this controversy, what am I do to? (Answer: “Toot my own horn.”)
Look, I’m neither here to vilify Autism Speaks nor to defend them. I will present the science “as-is” but I will also point out other advocacy and research organizations with similar aims and a more inclusive approach towards adults with ASD. Here are a few:
- Simons Foundation Autism Research Initiative (SFARI) – SFARI is funding some amazing, inclusive science on the etiology and mechanisms of Autism. These initiatives include: one of the largest clearinghouses for ASD-related data; one of the largest brain tissue banks for autism research (note: SFARI founded this brain bank with Autism Speaks in 2013, but assumed sole funding in 2016); an online genomic database tailored for ASD research; and a boat load of data analytics tools to assist in ASD research. As a Federal Health IT practitioner, I geek out over these and you should too.
- The Autistic Self Advocacy Network (ASAN) – ASAN is less about the science side and more about incorporating ASD as a natural variation in cultures and populations. This includes redirecting funding from genomics and causation of ASD, toward assistive communication technology and educational best practices to help incorporate citizens with ASD into society. It should be noted that Autism Speaks also funds research into assistive technology, but secondary to research on the causes and mechanisms of ASD.
- Academic Autism Spectrum Partnership in Research and Education (AASPIRE) – AASPIRE, which receives NIH funding and works in concert with ASAN, bridges the gap between SFARI-style science and ASAN-based advocacy. Research by AASPIRE specializes on communication, quality-of-life and educational best practices.
While I will not discount Autism Speaks entirely, I do look to find harmony between their research and those of SFARI, ASAN, and AASPIRE. I feel that understanding the causes and comorbidities of ASD is important, and I feel that finding ways to communicate with and bring out the best in people with ASD is also important. I’m ducking the controversy entirely by providing you, the reader, with the tools to make your informed decision.
One final controversial thought: if you think that ASD is caused by vaccines, stop reading now. Your point of view has never been replicated or proven. The original paper claiming this correlation has been retracted and the author has admitted fabricating events and having undisclosed conflicts of interest. It’s 2019 and we have children dying of measles outbreaks. If, with all of this scientific literature pointing out the lack of correlation between vaccines and autism, you believe the contrary, there’s nothing I can do for you. Enjoy your spring and…
With that said… let’s dive in.
Communication and Point of Care
At its core, those with ASD process sensory input, and communicate, differently than neurotypical people. Communication is key for effective provision of care. We already know that providers aren’t that great at communicating with patients to begin with.
“It has been observed that communication skills tend to decline as medical students progress through their medical education, and over time doctors in training tend to lose their focus on holistic patient care. Furthermore, the emotional and physical brutality of medical training, particularly during internship and residency, suppresses empathy, substitutes techniques and procedures for talk, and may even result in derision of patients.”
Currently, best practices on communication focus on clear language, proactive conflict management, and informing/empowering the patient. What happens, however, when the patient communicates in a fundamentally different way than the provider? What happens when pain – often diffuse and difficult to locate, such as the GI problems that many with ASD have as a comorbidity – is impossible to describe or relate? What is the solution to this problem?
Using the tools we have, such as FHIR-based Intelligent agents, Telehealth, and assistive devices like tablets, are a start. This allows non-verbal communication for older/literate high functioning children and adults with ASD. For face-to-face encounters, we can use technology to work with the fact that patients with ASD often have difficulty processing nonverbal body language, and with parsing figurative language like sarcasm and idiomatic expressions. For a child on the spectrum, telling them a tonsillectomy will be a “piece of cake” may confuse them. It is an easy fix to add a field to any EHR to note whether a patient is neurotypical or on the spectrum, and in doing so flag the doctor’s tablet or chart to indicate plain straightforward language and appropriate body language posture. These best practices can be promulgated using intelligent agents and distributed to the entire care team.
ASD also affects how the brain parses sensory input. Remember how it feels to see an explosion of spring color, scent and sound after a silent grey winter? Multiply that exponentially and you can see why some patients with ASD are often intimidated by large waiting rooms, bright lights, and the hustle and bustle of clinicians. In a study of adults with ASD, many of their wishes involved clinicians working with sensory limitations and providing the right level of information to allow informed decisions.
“The lights in the office are very bright and that is exacerbated by the white walls. Sometimes the waiting rooms are crowded and I cannot filter out the background of people talking or shuffling magazines. I feel disoriented by being led down long hallways to different rooms…. I am not able to bring up my concerns because it is all I can manage to figure out what the doctor is saying so I can respond to his questions. But he refills my usual meds and I go on my way.”
Where Health IT shines here is the ability to link the provider with the caregiver network. Even for high functioning adult patients with ASD, family and friends always know the best way to “click” and relay information effectively. Care network tools like secure messaging, videoconferencing and delegation of authority to caregivers, let providers use the best way to communicate with a patient on the spectrum.
Comorbidities and Improving Outcomes in an ACO
You can talk the talk about moving from fee-for-service to value-based care, but you won’t be living the value-based life until you understand what goes into patient outcomes. This includes social determinants of health, and you better believe that ASD is affected by these determinants.
Prior research has demonstrated that some of the variability in ASD-related health services utilization relates to social determinants of health (SDH), such as race/ethnicity, parent income, and parent education. For instance, poor and minority children with ASD have difficulties accessing therapy services, and use less medical specialty care than non-poor white children. In addition, poor and minority children face numerous barriers to ASD diagnosis.
As we move more and more toward a connected, value-based care model, we need to factor these variables into a tailored care plan for the patient. This is important because ASD has a lot of comorbidities, many of which require risky or costly interventions. It’s a long list, but highlights are below:
- Epilepsy (25-40% of the ASD population)
- ADHD (30-50% of the ASD population)
- GI disorders including GERD and IBS/IBD (a whopping 85% of the ASD population!)
- Anxiety (40-60% of the ASD population)
- Bipolar Disorder
- Sleep disorders (50-80% of the ASD population)
- Autoimmune disorders (more on that below)
Please note many of the interventions for these conditions require controlled substances with their own risks. ADHD is treated with Schedule II stimulants, which carries significant risk. It’s important to use Health IT to track these comorbidities to prevent adverse interactions. If I am taking a bunch of amphetamines to help my ADHD, that might not do so well for my anxiety or my sleep disorder, and the come-down might affect depression. A good health record tracks things in a complex care plan, but a bad health record dumps it as silos of data. Silos kill.
One area where Health IT has already helped is in using analytics to find an emergent correlation between ASD and various autoimmune issues.
There is firm evidence of immune dysfunction in individuals with autism. Results of numerous studies point to abnormal immune function, including on-going neuroinflammatory response. Several postmortem and in vivo investigations found chronic inflammatory processes in multiple areas of the brain and multiple studies have found a correlation between levels of immune dysfunction and severity of autistic symptoms … These observations resemble findings in other inflammatory and autoimmune disease states, in which elevations in levels of cytokines or autoantibodies are associated with the pathogenesis of neuroinflammation, neurotoxicity and neuronal injury, and subsequent behavioral and cognitive impairments, for example multiple sclerosis or HIV-induced neurological dysfunction.
This is a fairly recent observation and a very exciting discovery. It also means that a patient’s longitudinal record will be more important than ever. According to the American Academy of Pediatrics in a 2010 publication: “For patients with ASDs, a detailed history (including personal history of allergic disease, dietary history, and family history) and physical examination should be performed to accurately identify potential comorbid allergic disease.” In other words, using Health IT to bridge the gap will allow providers to proactively identify and resolve comorbidities before they can become issues. This is important because many outward behaviors that are attributed to ASD may be responses to an allergic reaction! Using Intelligent Agents to cross-correlate and flag conditions like this will be key to improving outcomes in any accountable care organization.
Both IgE and non-IgE mediated allergic reactions are increasingly recognized causative factors of anxiety and mood disorders. As well, these allergic reactions contribute to difficulty focusing, irritability, tics, daytime fatigue and sleep problems in both children and adults …. Given the high prevalence of allergic diseases and non-IgE mediated hypersensitivity reactions and mast cell over-activation in autism, as well as confirmed HPA and sympathetic over-activation (see following section), it seems likely that many aberrant behaviors that are frequently characterized as ‘autism’ are being caused or exacerbated by potentially treatable and preventable allergic reactions.
—- Medical Comorbidities in Autism Spectrum Disorders: A Primer for Health Care Professionals and Policy Makers
It is important to improve these outcomes because the Healthcare system is failing patients with ASD and people with ASD have a significantly higher mortality rate than the general population. How significant, you ask? 2.56 times as likely.
Please note: the suicide rate is nearly eight times that of the general population, nine times if you specify only high-functioning ASD members. Many of the cognitive patterns that ASD causes can lead to focusing on a negative thought and amplifying suicidal ideation. More importantly, the social isolation from being ASD in a neurotypical world can lead to bullying, abuse and PTSD. Here, Health IT can help. Using connected care technology to flag and track a patient’s mental health, and allowing check-ins from the care network, will help mitigate problems like these. Hey, if we do it for Veterans….
I’ve Heard Enough. How Can I Help?
Glad you asked. There are many ways to use technology to improve outcomes for patients with ASD. As mentioned earlier, assistive technology like tablets helps with exchange and digestion of health information. Technology can limit intrusive stimuli like sounds or lights that can derail a patient encounter or intervention.
Many people with ASD are visual thinkers. According to Temple Grandin, author, speaker, and an individual with ASD, pictures are their first language, and words are their second language. As concrete, literal, visual thinkers, individuals with autism can process information better when they are looking at pictures or words to help them visualize information. Technology just makes visual images more accessible to the individual with ASD. Computer graphics capture and maintain their attention.
We also need better UI/UX for health applications, like those that create patient generated data, allow secure messaging with providers, online appointments and pharmacy refills, etc. If you’re an application developer and want to design something targeted at ASD patients, here are a few resources to use:
- Smart apps for Special Needs
- Apps and Autism
- Apps for Children with Special Needs
- Autism Apps
- Mobile Learning 4 Special Needs
For a fuller review of existing technologies targeted at improving outcomes for children with ASD, including smart apps, telehealth, music therapy, chat robots, and more, check out this study.
A World Where Every Piece Fits
In the past, autism was considered a disease to be cured at all costs, like cancer. Yet those with ASD have spoken against this time and again, pointing out that their different way of approaching problems can help bring value to the workplace, especially in technology, and to the world. On the other hand, modulating factors of ASD can assist in better social integration, at least in clinical tests.
It’s difficult to say how much research should go toward changing autism versus accepting and coping with it as a natural variation in society. In that sense, ASD is unique in that it straddles the line between medical condition and phenotypic variation. I cannot answer the question of what to do with autism itself. I am no bioethicist. I write hot takes on FedHealthIT. What I can say is this: right now approximately one percent of the world has ASD. The cost of care is over $268 billion annually, set to rise to $461 billion by 2025. Medical expenditures for children and adolescents with ASD are four to six times greater than the general population, with over two and a half times the mortality rate and eight times the suicide rate. That isn’t right and needs to be fixed.
We in the Federal Health IT community are at the right intersection of research, policy and technology to help find ways to improve outcomes for people with ASD. While reducing burdens on our Healthcare system, we can bridge the communication and care gap with the ASD population. In doing so, we can improve their quality of life, while also adding their diversity to our own. That’s a world where every piece fits; that’s the world I want to live in.
Let’s solve this puzzle, once and for all.