Approximately 2.45 million adult Americans live with High-Functioning Autism. The majority of applications or services for autistic people are designed for children with autism or low-functioning autistic people, which creates a gap in resources. Living in a neurotypical world with an autistic perspective can be isolating and challenging socially, as very few neurotypical people understand autistic experiences. People with high-functioning autism need more or better access to social resources.
How might we question_1.0:
How might we empower young adults with high-functioning autism to build better mental health habits, in order to feel more confident in their daily lives, in an accessible way?
Literature Review Summary
Some key takeaways I learned from this in-depth analysis are that people with high-functioning autism fall into a unique category between people with low-functioning autism and neurotypicals, because of their high to average IQ but lack of social awareness. This grey area creates a gap in resources: lack of trained mental health professionals, lack of understanding among neurotypical peers and lack of resources for adults with high-functioning autism. This places people with high-functioning autism in an area that is considered at-risk regarding mental health, leading many people with autism spectrum disorder to most commonly develop severe depression or anxiety (especially so if they’re diagnosed after the age of 12).
Some therapeutic methods that have been explored for people with autism spectrum disorder, with a mixed levels of success, are: transcendental meditation, occupational therapy, cognitive behavioral therapy and group therapy. However, Cognitive behavioral therapy and group therapy is less accessible because of the lack of support / understanding specific to people with high-functioning autism. Improper treatment can worsen self-esteem and well-being, if the professional does not have experience working with people with autism. The types of therapies that would be most accessible to an adult with autism spectrum disorder would be meditation and occupational therapy, both of which achieved moderate to high success in improving stress levels, confidence and well-being, however these methods require some coaching and intrinsic motivation, which may not be easily achieved on an individual basis.
Primary Research Summary
In my primary research stage, I surveyed 10 respondents in my online survey and interviewed 3 young adults with autism. Because my pool of participants is small, I supplemented my results with the Autistic not Weird survey which received over 11,000 responses from both autistic and non-autistic people. I focused on a few main themes: therapy, mental-health, identity, social and autism-specific experiences.
Therapy:
My respondents had mixed views on therapy. One half of them considered it to be helpful and that therapy improved their lives in one way or another. Some respondents claimed the therapy helped them learn to better express themselves, socialize with peers or learn coping skills. The other half of the respondents were neutral towards therapy, they did not consider it useless but they didn’t have any life changing revelations because of therapy. About 60% of respondents claimed to be misunderstood by a therapist or counselor at one point in their lives. One quote from an interviewee was that “[therapists] with the best of intentions could never fully understand my experiences, because they’re not autistic.”
Overall, the data for this category was mostly inconclusive. People had no strong feelings one way or another in regards to therapy, aside from the idea that some wished therapists had a better understanding of autistic adults’ needs.
Social:
This theme had the strongest, most unified response out of any other. When respondents were asked if they felt socially isolated, 75% agreed with that statement. In addition, when survey respondents were asked about how resources for autistic adults could be improved, several said they wished for “autism friendly social groups” and “young adult social support.” Other respondents talked about prior experiences, how “peer socialization has always been a struggle.” The issue is more complex than that though, one interviewee stated that “because the [autistic] community is so diverse, I can’t always relate to the voices in those spaces.” Therefore, because autism can manifest in such a wide variety of ways, people within the autistic community can’t necessarily relate to every autistic person’s experiences.
The conclusion for this theme is that socialization within the autistic community is a relatively unified subject, many people within the community feel isolated from their peers. This could be contributed to the nature of autism spectrum disorder itself, but it could also be attributed to negative stereotypes and misconceptions about the autistic community in the wider world. Regardless of the reason, the collected data shows a resounding desire for more social resources.
Mental-health:
The large majority of my respondents reported having comorbid mental health disorders, the most common being depression, anxiety and sensory-processing disorder. However, the same majority reported that these disorders didn’t affect their daily lives, excluding those with sensory-processing disorder. My interviewees attributed this to coping mechanisms such as therapy, medication and therapeutic hobbies. Those with sensory processing disorder reported that living with sensory issues increased their anxiety and ability to lead an independent life, though sensory-unique coping mechanisms help.
The conclusion for this theme is that comorbid conditions are common among autistic individuals. However, most of them have been diagnosed and treated for these conditions and are already aware of how to cope with them.
Autism-Specific Experiences:
The data within this theme is more complex, because (as stated before) the autistic community is a widely diverse group. When respondents were asked how autism most affected their life, they listed over 30 traits, the following being the most relevant to this study: anxiety (79.7%), sensory issues (72.29%), enthusiasm for special interests (72.26%), meltdowns (66.31%), struggles with eye contact (55.41%), family struggles (50.20%), visible stems (47.14%) and being bullied (45.97%). All of these effects would contribute to the previously discussed social isolation. When respondents were asked if autism awareness focuses too much on children, 87.4% of respondents agreed. In addition, when asked what they thought of the general public’s understanding of autism, 97% of respondents said that the general public does not understand the autistic community.
This theme contained so much data, because everyone that responded and was interviewed had some amazing stories to share. It’s difficult to categorize unique perspectives and experiences. That’s exactly what can be learned from this data though, that though the community has common struggles, each has contended with their disorder in a unique way on a distinctive path and perspective.
Identity:
The data for this category is all over the place, but that’s not surprising given the topic. Identity is extremely personal and unique to each individual, however some trends did emerge from the data. Survey respondents reported a wide range of unique hobbies and interests, however 50% reported enjoying music. Survey respondents expressed acceptance of their disorder, several stating that autism is a part of who they are. One interviewee distanced themselves from the word, stating that “[they] are the same as everyone else, autism is just a label others give to [them].” However, when asked about language choices when referring to their disorder, 51% of respondents preferred to be referred to as “autistic person” in contrast to “person with autism”.
Overall I think the data for this theme confirms that nothing can be concretely concluded from this data about autistic identity, everyone has individual opinions about their identity, and the solution ahead should reflect that right to specify.
How might we question_2.0:
How might we create a space for high-functioning autistic people that promotes connection, empathy and community among those with mutual experiences and understanding?
Design Outcome
What is unun?
Unun is a mobile application created with high-functioning autistic people in mind. It is an app designed to help people make connections with people who can mutually relate to their experiences. Using a specialized algorithm, unun connects people based on where they are on the autism spectrum, while also taking into account hobbies, interests and location. From this, unun sorts people with a match percentage, based on how likely you are to get along. Each user’s profile includes their first name, age, location, a brief description about them, and Interest chips. Interest chips can be selected from our extensive lists of hobbies and interests, or customized based on specific passions. Users can also optionally choose to include their autism spectrum visualization on their profile, which will give anyone access to view and compare the users results to their own. We think that including this option promotes a sense of transparency and pride.
The in-depth 24 question Spectrum Quiz gives users a visualization of their place on the autism spectrum. The visualization is broken down into six categories, based on the Autism Spectrum Quotient test: Talent, Compulsion, Social,Communication, Hunting and Perception. The visualization measures on a circular graph on a scale from 0 - 10, a 0 being more neurotypical leaning, with a 10 being mostly autistic leaning. They have the option to include this on their profile, which allows them to compare their experiences with others in a comprehensible way. For example, if a user wants to talk to someone who can relate to their struggles with communication and relationships, a user could filter their matches by people who closely match their visualization.
Unun also includes a community feed alongside the individual feed. The community feed is used for larger discussion, sharing and self-promotion. A user can post about their products or businesses in order to promote autistic entrepreneurs, or if they’re a writer or artist they can advertise their work in this section as well. Though it’s not just for advertising, broad discussion and advocacy for just about anything is encouraged as well. In the community and individual feeds, users can use customized filters to sort people by interest, or sort by topic in the community feed section. For example, if a user really wants to talk to someone about an upcoming rock concert, they can go to their filters, and sort interests by “Rock”, “Hard Rock”, or even by band name.
Since unun is made for people on the autism spectrum, we don’t want to exclude anyone who may have a physical disability that prevents them from using this application. Unun’s flexible interface allows the user to customize their experience based on their requirements. Users can change the UI colors, fonts, font sizes, and UI scale, to best fit their personal needs and preferences. This also works alongside the accessibility settings which allow visually impaired users to adjust the interface to their needs, whether it be vocal navigation or larger UI scaling. Inclusion is something unun considers very vital in their application.