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Improving Outcomes for Adults with Self-diagnosed/Undiagnosed Autism by Adapting Existing Technologies to Create a New Treatment/Coaching Delivery Model: A Research Proposal
The number of adults with undiagnosed Autism Spectrum Disorder (ASD) is unknown, but if it is close to the rate of diagnosis in children, that figure could be approaching 2% (“CDC increases estimate of autism’s prevalence by 15 percent, to 1 in 59 children | Autism Speaks,” 2018). Increased awareness and the dissemination of information over the Internet are leading more adults to question the possibility that they have lived their lives with undiagnosed ASD and increasing demands for diagnostic and support services for these adults.
Unfortunately, specialists trained in diagnosing and providing support services for adults with ASD are not available in every area and can be financially beyond the reach of many potential clients. Clients may also have a variety of concerns related to trust-levels, anxiety, cultural and familial considerations and more which might prohibit them from seeking a formal diagnosis (Lewis, 2016).
Lewis reports that even self-diagnosis gives adults with suspected-ASD an increased sense of belonging through the realization that there are others like them (and opportunities to interact with those others through online forums), as well as a reported increased understanding of self (2016). Given the evidence of the co-morbidity of other psychiatric symptoms and disorders among adults with ASD (Lever & Geurts, 2016), increased self-understanding and a greater sense of belonging can be a powerful motivator towards pursuing answers for improving one’s life based on the newly discovered information of diagnosis, self- or otherwise. Indeed Lewis reports many of the self-diagnosed individuals in her study reported making autism one of their special interests in an attempt to confirm or refute their hypothetical diagnosis.
Anecdotally, as someone who recently self-diagnosed with ASD, the author can attest to the unquenchable thirst for more information and specifically for useful techniques for managing my executive function, building social skills, issues related to employment and other areas of life affected by neurodiversity. What exists is a scattering of other autistic individuals sharing things that they have learned, hacks for managing executive function or tips on how to flirt, but the level of support feels inadequate to the need of discovering that my brain works in a different way than most people’s, and it feels like the resources I might need are reserved for those with formal diagnosis, and for those who can afford specialized therapy and coaching services and/or have them available in their area. I would hazard a guess that my experience in this is not uncommon in this respect.
Ethical Considerations of Providing Services to Self-Diagnosed Individuals
As Laura Foran Lewis reminds us in another excellent article on “Identifying autism spectrum disorder in undiagnosed adults,” clients may have many reasons for not seeking a formal diagnosis, some of which (like availability of services, or financial considerations) may be out of their control. She recommends helping clients weigh the costs and benefits of getting a formal diagnosis and reminding them that a formal diagnosis is required of individuals “seeking Social Security disability benefits or employment accommodations through the Americans with Disabilities Act of 1990” (2018). Other recommendations such as this could be incorporated into an informed consent form for clients lacking a formal diagnosis but seeking treatment for self-identified autism or Asperger’s profiles.
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Providing coaching or therapy services to these self-diagnosed individuals amounts to treating the symptoms rather than the diagnosis. Many people might benefit from shared tips on how to improve the functioning of one’s executive function, prioritize tasks, build routines and habits, improve their social skills. If the course of treatment involved pharmaceuticals or other potentially dangerous treatments that would be a different matter, but providing the types of services described above as requested by self-diagnosed individuals must be ethical, and empowering self-diagnosed individuals to choose that for themselves provides an empowering boost of self-determination, which has been identified as an important factor in quality of life among individuals with autism (Kim, 2019).
Adapting Existing Technologies to Provide a New Form of Online Coaching: Proposal
A Club for the Club-less
Simply put, what I am proposing to do is to adapt existing technologies, specifically cloud-based multi-platform software designed to help business teams stay on task and achieve objectives--team collaboration software--to build multiple small (group therapy sized, or even smaller groups of 3 or four) online networks of clients receiving coaching services, including help creating to-do lists, goals, and routines utilizing the software and everything we know about best strategies for helping someone with autism, while providing and receiving peer-support and accountability through their interaction with peers’ lists and goal-setting and seeking. Some of these software solutions function like company-wide social networks which would provide opportunities for building social skills. Opportunities to engage with the larger group via a Facebook group or some other means might provide additional opportunities for collaboration, peer support, advocacy, social engagement, or creating culture. Other content (perhaps even client-generated content--e.g. particularly useful checklists or strategies for dealing with particular situations) could be delivered electronically to all members. This entity would be a membership organization, with members getting a say on important issues, and working towards common goals of raising awareness and overcoming deficits and helping others overcome their deficits.
Measurement of Sucess
Success would be measured by successful adaptation and use of the tools with guidance from peers and coaches, as well as quantitative and qualitative assessments of clients’ functioning both before signing up for services and periodically after enrolling in the program.
Additional Desired Outcomes
Through this process, if we can get enough feedback from members, we could potentially generate a list of best practices for adapting existing technologies to help individuals with autism function better in a neurotypical world. Additional technological adaptations, such as how to make the most of integrated applications like Google Assistant to create reminders, alarms, and manage one’s calendar, or maybe how to adapt technology to help make decisions or prioritize tasks might prove useful to others working with these populations.
Conclusion
It’s arguable that individuals with Autism are largely responsible for creating this alternate universe of Internet technology we live in and ironic that it is that technology and the power of it to disseminate information which seems to be driving a wave of adults who recognize in themselves symptoms of unrecognized, undiagnosed ASD. It seems only appropriate then that we adopt this technology to improve the outcomes of individuals with ASD or Asperger’s profiles by creating the support network they need and empowering them to choose those tools which work for them or create new ones as needed and share those with the community.

References

Removed because the URLs were preventing me from posting (because I am new around here), but I can provide them upon request

And, although I haven't perused all your text, what does this ap accomplish which is pen and paper does not?

Call me a dinosaur if you want!

I think your ideas are excellent! But a couple of technical issues:

1) Don't use Facebook, which has a policy of requiring legal names. Best to have a platform that allows pseudonyms, to protect privacy. (Please note that the psychotherapy profession traditionally has privacy standards that are stricter even than HIPAA.)

2) If your target audience includes older adults, don't assume everyone wants to participate via smartphone, or is willing to use a smartphone app. So, either instead of or as an allowed alternative to Taskade, it would be far better to use a web-based platform that works well either via a smart phone or via a laptop or desktop PC. For the phone users you can perhaps also provide a simple app to facilitate login to the web-based platform.

I personally hate smartphones because (1) I'm a touch typist accustomed to working on a standard keyboard, and (2) I generally hate dealing with the tiny screen on a cell phone. I use my PC for Internet access and I use my cell phone (an old-fashioned flip phone, not a smart phone) just for talking and for almost nothing else (except receiving, but never sending, an occasional text message).

Can you summarise in under 100 words what you are looking for? Sorry this phone screen gives me a headache when I read the small text too long.

And, although I haven't perused all your text, what does this ap accomplish which is pen and paper does not?

Call me a dinosaur if you want!

The Facebook group would be an optional closed group, for members who want to interact there, linked to a public Facebook page designed to help create more awareness about the project. Regarding privacy concerns, I believe it would be appropriate to advise in the informed consent that privacy is not necessarily guaranteed (no more than it is here on Wrong Planet) and individuals shouldn't use the program to share information they wish to keep private. But I don't think that would keep it from being a useful tool. As far as HIPAA is concerned, this will be designed as a self- and peer-augmented help tool, under the life-coaching umbrella, nothing that HIPAA need concern itself with.

One of the key reasons I chose Taskade is that it is an omni-platform offering. They have downloads for Windows, iOS, and Linux, in addition to the smart phone apps and even a Chrome browser extension. I personally prefer to use a full sized keyboard (on a Chromebook in my case), so I completely understand that. I also understand that while my aim is to serve as many adults as possible, I know not everyone is going to embrace the technology.

I suggest not reinventing the wheel by making a new forum on a different web site and asking people to register on web site # 1,000,001. You're at the right place already, and I don't know how you could one-up wrongplanet on anything forum-related. Maybe just ask the mod here for a sticky dedicated thread to your project in an appropriate subforum here.