Caregiver Access to Resources and Emotional Support (CARES) Hotline Act

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

An April 30 release from Rep. Bob Menendez (D-NJ):

Today, Congressman Rob Menendez introduced the Caregiver Access to Resources and Emotional Support (CARES) Hotline Act, legislation establishing the first-ever national 24/7 hotline dedicated to supporting caregivers of individuals with developmental disabilities.

“Caregivers are the backbone of support for millions of Americans living with developmental disabilities, but they are too often left without the resources, guidance, and support they deserve,” said Congressman Menendez. “Our CARES Hotline Act creates a critical lifeline to provide caregivers with emotional support, counseling, and other key services. I am proud to introduce this legislation to support our dedicated and compassionate caregivers and help them continue to make a difference in the lives of so many across our country.”

“No family should be told to figure autism out alone, yet that is the reality for far too many,” said Jas Singh, Chief Strategy and Operations Officer, Whole Spectrum Autism. “The CARES Hotline is a critical step toward changing that by giving caregivers a real place to turn in moments of stress, uncertainty, and isolation. This is about more than support, it is about access, guidance, and making sure families are no longer navigating this journey without help. Whole Spectrum Autism is proud to support this effort and stand behind solutions that bring real, immediate impact to our community.”

"Caregivers of individuals with developmental disabilities, including Autism, are a vital part of our communities, and many are stretched thin managing complex systems and significant emotional demands without adequate support,” said Joseph Joyce, President and CEO, Autism Society of America. “Establishing a national hotline is a meaningful step toward ensuring caregivers have access to timely information, mental health resources, and compassionate support when they need it most. We commend Representative Menendez for recognizing this critical gap and introducing legislation that prioritizes the well-being of caregivers and, in turn, the individuals they support.”

The CARES Hotline Act was developed after Congressman Menendez engaged in conversations with Whole Spectrum Autism, a Jersey City-based autism advocacy group. These conversations highlighted the struggle caregivers face in navigating the unique challenges of caring for individuals with developmental disabilities, managing services across fragmented systems, and dealing with the emotional and financial strain that accompanies long-term caregiving.

The CARES Hotline Act would:Create a nationwide, toll-free, 24/7 hotline staffed by trained professionals who can provide emotional support, brief intervention, and mental health referrals.
Offer peer-to-peer counseling so caregivers can connect with others who understand their experiences.
Establish and maintain a national database of caregiver resources, ensuring timely access to relevant information and support services across all states and territories.

This legislation is endorsed by Whole Spectrum Autism, Autism Society of America, and Autism Speaks. It is co-sponsored by Congressmembers Lou Correa (CA-46), Zoe Lofgren (CA-18), Eleanor Holmes Norton (DC-At Large), Bennie Thompson (MS-02), and Frederica Wilson (FL-24).

Earlier this month, Menendez met with Subodh Garg, who was featured on Netflix’s Love on the Spectrum, and his sister and autism advocate Aarti Garg to discuss support for those in the autism community and caregivers.

Congressman Menendez currently serves on the House Energy and Commerce Committee, where he continues to champion legislation supporting families, expanding community resources, and ensuring vulnerable populations receive the care and attention they deserve.

Telehealth and Diagnosis

In The Politics of Autism, I discuss evaluation and diagnosis.

 A release form UC Riverside:

When the COVID-19 pandemic shut down clinics and forced face-to-face interactions behind masks, autism diagnoses for many children came to a halt. For Katherine Meltzoff, a professor of education at UC Riverside, the disruption exposed a critical gap and an opportunity. "We were trying to figure out how to adapt autism diagnostics to be done virtually," Meltzoff said.

New virtual tools for diagnosis

The result is a set of telehealth tools described in a paper published in the Journal of Autism and Developmental Disorders that are designed to help clinicians diagnose autism remotely, especially for children who are older or have developed verbal communication skills.

Meltzoff explained that there are already a number of validated virtual autism assessment tools for children aged 3 and below, and for those with minimal spoken language, but not for those who are older and have more verbal speech.

"Telehealth seems to work really well for the kids that have more obvious symptoms and that are younger," said Meltzoff, the lead author.

Meltzoff's research tested whether these virtual assessments could match the accuracy of traditional, in-person evaluations, offering a potential solution to long-standing barriers in autism diagnosis.

How autism is typically assessed

Autism spectrum disorder is not diagnosed through a single medical test. Clinicians observe how a child communicates, interacts socially, and responds to the world, while also reviewing developmental history.

"We diagnose it behaviorally, so we're looking at behaviors that the child displays," Meltzoff explained.

During the first months of the COVID-19 pandemic, autism assessments came to a halt due to the widespread "shelter at home" guidelines.

As restrictions began to ease, assessments remained challenging because facemasks worn by the clinicians and family members hid facial expressions, which are a large part of the social communication and behaviors under evaluation.

Recreating clinic sessions online

In traditional clinical settings, those observations happen during carefully structured, in-person sessions. For her study, Meltzoff recreated those interactions online.

Using videoconferencing tools, clinicians guided parents through activities—such as calling a child's name or engaging in play—while observing how the child responded. For older children, clinicians interacted directly with them through conversation and structured tasks.
Comparing telehealth and in-person results

To test accuracy, Meltzoff and her team recruited 39 children seeking autism evaluations through a university-based clinic. Each child underwent two separate assessments—one in-person and one via telehealth—conducted by different clinical teams who were unaware of each other's conclusions.

The results were promising. One of the tools developed for children whose speech is limited to short phrases showed particularly high accuracy, while another designed for more verbally fluent children was effective in many cases but less consistent.

The study also found that parents were largely satisfied with telehealth assessments, suggesting the approach is both feasible and acceptable for families.
Improving access for families

The need for alternatives to in-person diagnosis is significant, Meltzoff said.

"A lot of people live two hours from an autism clinic," she said. "Getting your kid two hours to a clinic, then doing an appointment and two hours home just isn't really feasible."

The approach is especially important for families in rural areas or those with limited financial resources. For some, transportation costs or lack of access to reliable transit can make in-person visits difficult.

Additionally, a formal autism diagnosis is often required to access essential services. While schools can provide some support without a clinical diagnosis, insurance coverage for therapies typically depends on one. Those services include speech therapy, occupational therapy, and one-on-one behavioral interventions—all of which can be critical for helping children develop communication and life skills.
Limits of telehealth for complex cases

Still, Meltzoff cautions that telehealth is not a one-size-fits-all solution. Children with more subtle symptoms or co-occurring conditions such as attention deficit and hyperactivity disorder (ADHD) may still require in-person evaluations for accurate diagnosis.

The paper's title is "A Telehealth Diagnostic Tool for Autistic Children With Phrased and Fluent Speech: Comparison to In-person Diagnosis." In addition to Meltzoff, its co-authors are Cameron Alexander, Amy Hoffman, and Jan Blacher, all with UCR's School of Education.

"I don't want to oversell it," Meltzoff said. "It works for most kids, but more complex cases—the ones that are already difficult even when done in-person—can be harder to evaluate remotely."

Even with those limitations, the study validates new tools for children with a wider range of communication abilities.

"How accurate is telehealth?" Meltzoff asked rhetorically. "We found it's pretty good."

Robots

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

From UC San Diego:

Nearly 90% of researchers who develop robots for autistic people didn’t bother to ask autistic people if they need the technologies, says Naba Rizvi, a computer science Ph.D. student in the University of California Jacobs School of Engineering and a self-identifying autistic woman.

Rizvi, who is with the Department of Computer Science and Engineering, raises this point in an impassioned video and in her work that investigates the stereotypes about neurodiversity perpetuated by computer science research. She is the first author of a new study, “Are Robots Ready to Deliver Autism Inclusion?: A Critical Review,” presented recently at the Association of Computing Machinery (ACM) CHI conference on Human Factors in Computing Systems.

In the qualitative study, Rizvi and her colleagues analyzed 142 human-robot interaction (HRI) papers published between 2016 to 2022 that explicitly identified autistic people as the end-users. They sought to determine whether autism is stigmatized in HRI research and to pinpoint how systemic social inequalities could be reproduced by them.

The team concluded that HRI research papers within their main corpus stigmatize autism and exclude the perspectives of autistic people. Roughly 93.5% of the research in the six-year period applied a model that pathologizes autism– focusing on “treating” autism as an illness– while many of the papers perpetuated gender and age biases as well as power imbalances. Meanwhile, fewer than 10% of the papers included a representative sample of women with autism.

AI Companionship

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. 

Webb Wright at Scientific American:

Many mental health experts have serious concerns about people who are socially isolated—autistic or not—relying on AI companionship apps as a means of self-treatment or escapism. The problem is “not the inherent content of the AI,” says Catherine Lord, a clinical psychologist in Los Angeles who specializes in autism. But she worries that AI can exacerbate a user’s isolation if the technology is used without the guidance of trained therapists. (Replika and WithFeeling.AI, Paradot’s parent company, have not responded to Scientific American’s requests for comment.)

The open-ended interactions provided by such apps present a double-edged sword for autistic users. Personalized avatars that respond to user behavior with encouraging, humanlike language could help autistic people open up about themselves, especially in ways they may not be able to with other individuals. But these avatars—unlike real people—are always available and very rarely criticize anyone’s opinions. “You end up in this circuit where you have an algorithm dressed up as a human telling you that you’re right and maybe pushing you towards bad choices,” says Valentina Pitardi, an associate professor of marketing at Surrey Business School in England, who has studied the emotional impacts of AI companionship apps.

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Lord also points to what she regards as a lack of real data that show any kind of therapeutic benefit of AI-powered apps for autistic users. She draws a comparison to prescription drugs: new medications must pass rigorous human trials before legal approval, and the same should be true of AI for autistic users, in her view. “It should be clear what the risks are and what the true value is,” she says. But many companion apps are only a few years old, and autism research is often a painstakingly slow process. For more than three decades, Lord has been running a single longitudinal study of autistic people, for example. It will take some time before she and other autism experts fully understand the technology’s potential consequences.

Autism and Tech Startups: The Rest of the Story

In The Politics of Autism, I discuss the employment of adults with autism and other disabilities. Many posts have discussed programs to provide them with training and experience.

Michael Bernick at Forbes:

In the early 2010s, a wave of tech start-ups arose with the goal of employing adults with autism, building on the claimed skills of these adults in software testing and quality control. Most of these tech start-ups failed to survive: casualties of the offshoring and competitive price pressures of the software testing and quality control jobs they focused on, as well as an overhyping of the tech skills of most adults with autism. But a few of these start-ups have survived and even grown, and they point to possibilities in this niche market of employment going forward.

The wave of autism-focused tech start-ups was generated in good part by a glowing New York Times article in June 2011 on the Danish tech firm, Specialisterne. The article uncritically accepted Specialisterne’s story, neglecting to note a key element in Specialisterne’s growth: the large subsidies that the company received from the Danish government for its mission. The American start-ups soon ran into the market realities of competing without large government subsidies, and in an environment of greater global competition.

Three start-ups from that period were able to navigate this competition, and continue to do so: AutonomyWorks, Ultranauts, and VenturesATL. Their success is due to the unusual skills and missions of the individual entrepreneurs who founded and continue to lead them, the teams they have built, and their ability to pivot and adapt to changing markets. Though the business lines of these companies differ, a common pivot has been to higher-level data and AI-related services.

Autism Research: British Perspectives

 In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

 Amelia Hill at The Guardian:

Dr Grainne McAlonan, a clinical professor of translational neuroscience at the department of forensic and neurodevelopmental sciences and Institute of Psychiatry, Psychology and Neuroscience at King’s College London, has just started investigating a psychedelic compound – psilocybin – found in magic mushrooms.

She is looking at the serotonin pathway, which plays a key role in a range of essential functions such as sensory processing, cognition, mood and sleep. One of the most consistent findings in autism research are differences in the serotonin pathway: more than 25% of autistic people have high blood serotonin levels.

If McAlonan identifies individual differences in the brain serotonin system targeted by psilocybin, the next step will be to ask whether they can establish if there is a biological response to the drug that might be clinically useful. “Ultimately, this research may allow us to provide more personalised choices for those autistic people who want the option of a medication for their difficulties,” she said.

This was an exciting time for autism research, said Matthew Swindells, an evidence, research and evaluation manager at the National Autistic Society.

He points to other research that addresses real-life issues, including the Bridging Project led by the University of Plymouth, which uses virtual reality to reduce the autism employment gap; autism in affinity spaces, led by Queen Mary University London, which explores how young autistic people use social media platforms to engage in their interests; and Audit 50, led by University College London, which focuses on the experiences of older autistic people, an often overlooked population.

Swindells said: “Perhaps, most importantly, researchers have moved away from stigmatising, deficit-based language and approaches. Instead, it has started to focus on the topics that really matter to autistic people. This can be seen with the emergence of more autistic lead researchers, as well as some brilliant examples of participatory approaches within research practice.”

Autistic Kids and Technology

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

MIT Press Reader:

In spite of widespread assumptions that young people on the autism spectrum have a “natural” attraction to technology — a premise that leads to significant speculation about how media helps or harms them — relatively little research actually exists about their everyday tech use. It’s a gap Meryl Alper, a researcher exploring the social and cultural implications of communication technologies, addresses in her new book “Kids Across the Spectrums,” an ethnographic study of the digital lives of autistic young people.

Based on nearly a decade of in-depth qualitative research conducted in the homes of more than 60 neurodivergent children from an array of racial, ethnic, and socioeconomic backgrounds, Alper challenges the prevailing myths and stereotypes that have perpetuated misconceptions about autistic youth and their relationship with technology. What Alper found is that what autistic youth do with technology is not radically different from their nonautistic peers. The experiences that children on the autism spectrum have with technology are less explained by their diagnoses alone, she writes in the book’s introduction, and more by the intersections of their disability with other aspects of their identity and the modern conditions of childhood: “They differentially face significant social and health inequalities, including limited recreational programs, poor neighborhood safety, and challenges receiving appropriate therapeutic services.” These disparities, Alper argues, “spill directly over into autistic children’s media habits.”

“Kids Across the Spectrums,” which is available in a freely downloadable open access edition, stands as a timely and deeply humane work that will especially resonate with educators, technologists, and parents of neurodivergent children, who will find insight and solace in its pages.

Huntsville

In The Politics of Autism, I discuss the neurodiversity movement.   

Jessica Penot at Psychology Today:

Huntsville is a haven for geeks just as the Silicon Valley of Silberman’s Neurotribes was. It isn’t surprising that Huntsville has also become a haven for autistic people. When I first opened my private practice, Tree of Life Behavioral Health, in 2015, people in Alabama still viewed autism as a disorder of nonfunctional boys who liked trains. I was high masking at the time and tried very hard to blend in with my neurotypical colleagues. I straightened my hair and tried very hard to master the art of small talk. Despite this, I very quickly noticed that most of my clients were oddballs who shared my passions. They loved dungeons and dragons, board games, horror movies, video games, and comic books. They were largely engineers or artists with passions that consumed them and with remarkable minds that often left me humbled.

It didn’t take me long to figure out that almost all my clients were autistic and that most of them came to me because of my weirdness and autism, not despite it. My practice flourished because I possessed all the traits, I had spent my life trying to hide. It flourished because Huntsville is a magical place filled with autistic people who are unique and brilliant beyond measure.

Robots

 In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. II also discuss the day-to-day challenges facing autistic people and their families.   Technology might provide some help to overworked parents and therapists.

Carey Dunne at Mother Jones:

Brian Scassellati, a professor of computer science, cognitive science, and mechanical engineering at Yale University, says that rather than replacing autistic children’s relationships with humans, social robots can help improve those relationships—as long as they’re used the right way. “Anytime you see a robot and child alone together, that’s probably not going to be successful,” Scassellati says, stressing that many professionals who teach children with disabilities with the use of robots still don’t understand this. “Successful interventions involve the child and the robot and someone else, like a parent or sibling. When they sit down like that, instead of the child just learning to engage with the robot, they’re learning how to interact with the parent or sibling. And that’s what sticks around when the robot’s gone.”

In a 2018 study co-authored by Scassellati, 12 children and their caregivers practiced communication skills with a robot named Jibo every day for 30 days. Researchers saw the children’s overall communication and joint attention improve, even when Jibo was not present.

Scassellati suggests that even in a world with unlimited human therapists, robots would offer unique benefits for autistic children. Skills training for autism often involves repetitive tasks, which robots can perform indefinitely without getting tired or frustrated, offering consistent positive reinforcement. When a robot is involved, children are more likely to participate in certain therapies, like “mastery therapy,” in which a therapist asks a child to teach a skill that they have mastered to another person.

Robots also have certain advantages over simpler technologies, such as tablets, which have become staples of classrooms for children with disabilities despite inconclusive research about their benefits. Aside from being more fun than screens—“Kids just like robots better,” Scassellati says—robots seem to accelerate learning. Perhaps most importantly, children are often more willing to listen and engage with a physical robot than with a flat-screen device. “When the robot says, ‘Hey, let’s do one more homework assignment,’ the kids say yes,” Scassellati explains. “And when a program on a screen asks the same thing, they turn it off.”

...

“There’s good evidence that kids are learning something in the short-term” with the robots,” Scassellati says. “But the thing that’s hard for parents to hear is, we don’t have any long-term studies that show that this is effective.” The longest studies on the subject ran for one month, which Scassellati stresses is not long enough to create lasting behavior change: “We see the kids make progress, but the progress they make disappears two to three months after the robot’s gone.” Researchers hope to conduct longer studies, but it’s a matter of time and funding.

AI Chatbots and Autistic People

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

Amanda Hoover and Samantha Spengler at Wired:

Autism affects people in many different ways and individuals can have varying needs. ChatGPT may not work for some or even most, but a common feature of autism is that social interactions can be difficult or confusing.

Using a chatbot to help with communication may seem unconventional, but it’s in line with some established ideas used in social work to help people become more independent. “We talk about empowering people and helping people to be fully autonomous and experience success on their own terms,” says Lauri Goldkind, a professor in Fordham University’s Graduate School of Social Service who focuses on the marriage of social work and technology. An accessible tool like a generative AI bot can often help bridge the gap left by intermittent access to mental health services like therapy, Goldkind says.

But the true impact of ChatGPT for therapeutic reasons is largely unknown. It’s too new—WIRED reached out to four clinical therapists and counselors for input. Each of them declined to comment, saying that they have yet to explore the use of ChatGPT as a therapeutic tool or encounter it in their sessions.

But ChatGPT still does not reason very well.  I asked it why Senator Rick Santorum sponsored the Combating Autism Act of 2006.  Among the reasons that it cited: " Santorum has a child with a developmental disability. His daughter, Bella, was born with Trisomy 18, a rare genetic condition that causes severe developmental delays. This personal experience likely influenced his interest in issues related to disabilities and special needs, including autism."  But Bella Santorum was born in 2008, two years after the bill passed.

Zoom Could Hasten Autism Evaluations

In The Politics of Autism, I discuss evaluation and diagnosis.

Sarah D. Sparks at Education Week:

Months of lockdowns have left a massive backlog of children who show the warning signs of autism, waiting for a formal evaluation to get help.

That’s why Megan Roberts hopes to move autism evaluations out of doctors’ offices and onto Zoom conferences, using staff who already work regularly with schools and early learning centers. In the process, she also hopes to clear the entire waiting list of 1,224 children in need of an autism evaluations in Illinois.

Roberts’s project is one of seven projects that have been awarded a share of $14 million grants from the National Center for Special Education Research. All of the funded projects are focused on supporting students with disabilities who have been disproportionately affected by the pandemic.

Roberts, an associate professor for the communication sciences and disorders early-intervention research group at Northwestern University, and her team received a four-year, $3 million grant to develop and validate a telehealth-based protocol to train speech-language pathologists to evaluate students’ risk of autism spectrum disorders. Using speech-language pathologists dramatically widens the pool of evaluators, as most school districts and Early Head Start centers have them, while a 2019 study found 84 percent of U.S. counties have no access to autism medical diagnosticians.

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About 85 percent of the time, parents of those diagnosed with autism spectrum disorders start to voice concerns about their child’s development well before age 3, according to the National Center on Birth Defects and Developmental Disabilities. But even before the pandemic, the center found only 42 percent received a developmental evaluation to diagnose the disorder by age 3, and 30 percent of children had not yet been formally diagnosed by age 8.

Algorithms and Hiring

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

From the Department of Justice:

This guidance explains how algorithms and artificial intelligence can lead to disability discrimination in hiring. The Department of Justice enforces disability discrimination laws with respect to state and local government employers. The Equal Employment Opportunity Commission (EEOC) enforces disability discrimination laws with respect to employers in the private sector and the federal government. The obligation to avoid disability discrimination in employment applies to both public and private employers.

...
The ADA bars discrimination against people with many different types of disabilities.

Some examples of conditions that may be disabilities include: diabetes, cerebral palsy, deafness, blindness, epilepsy, mobility disabilities, intellectual disabilities, autism, and mental health disabilities. A disability will affect each person differently.

When designing or choosing hiring technologies, employers must consider how their tools could impact different disabilities.

For example, a state transportation agency that designs its hiring technology to avoid discriminating against blind applicants may still violate the ADA if its technology discriminates against applicants with autism or epilepsy

....

Employers should examine hiring technologies before use, and regularly when in use, to assess whether they screen out individuals with disabilities who can perform the essential functions of the job with or without required reasonable accommodations.

For example, if a county government uses facial and voice analysis technologies to evaluate applicants’ skills and abilities, people with disabilities like autism or speech impairments may be screened out, even if they are qualified for the job.

Dell and Neurodiversity

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

Sam Farmer at The Hill:

It comes as no surprise that Dell has chosen to pursue a culture of neurodiversity. CEO Michael Dell has been quoted as saying “diversity and inclusion helps drive innovation and growth, and is critical to the long-term success of our company. I'm proud of the legacy we are building as an employer of choice for all.” New ideas from a diversity of perspectives result in a greater capacity for problem solving. New ways of thinking are incorporated into the technology offerings, fostering greater accessibility. And the autistic employees benefit as well. As such, Dell's Autism Hiring Program is a win-win-win proposition: for the company, for its people and for its customers.

When asked to speak about their employment experience at Dell, a few of the autistic members of Dell’s workforce have had wonderful things to say, as have their nonautistic colleagues. These folks admit to being eager to learn and to try new things. They value having an impact on those around them and being able to teach others. Dell affords them these opportunities, and taking advantage of them instills in them a sense of fulfillment, empowerment, belonging and connectivity with their colleagues. The business impact of these outcomes is the enhancement of team spirit, cohesion and focus.

Virtual IEP

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education is proving to be very difficult.

Corey Mitchell at Education Week:

Federal law has always allowed for remote meetings to review and approve students' Individualized Education Programs, the carefully constructed plans designed to meet the educational needs of children with learning and physical disabilities, but coronavirus school shutdowns made such meetings a necessity.

Figuring out how to manage the meetings from afar and agreeing on what services students are entitled to in an online learning environment emerged as one of the many challenges for families of special education students and the teachers who serve them.

In response to requests for help from educators and parents, a group of U.S. Department of Education-backed organizations developed a six-step guide to hosting and participating in virtual IEP meetings, with the acknowledgement that conducting the meetings may happen more often now, even after students return to brick-and-mortar schools. Designed for a 60-minute meeting, the infographic provides a sample agenda and tips on how to keep meetings focused and on-schedule.

Auticon

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.  

Jamie Wax and David McAlpine at CBS:

Of auticon's 300 employees, more than 200 are on the autism spectrum — a rare ratio for a company in the United States. Experts say the unemployment and underemployment rate for autistic people in the United States falls anywhere between 50% and 90%.

Now [Will] Collett is a QA analyst at auticon, working on finding bugs in software and on websites for clients around the world. Like many Americans, he's now working from home, which Collett says plays to his strengths as someone on the autism spectrum.

"A lot of us are a lot more introverted," said Collett. "There's always a certain point when I'm like, OK, I'm done hanging out with people. I'm going to go sit over here on my phone. I'm still having a great time, but I'm just kind of like done associating with people. And what I feel is really helpful for work from home, is that we can do just that," Collett continued. "We can do our work. We can focus on our work. And then when we need to talk to somebody — OK, let's open up a Zoom call. Let's open up a mic chat."

Auticon's employees are thriving in a remote work environment, said David Aspinall, U.S. CEO of the company.

"I think it's opening eyes to the possibilities of neurodiversity within the workplace. I think that we have a clear opportunity here," Aspinall said. "It's kind of a real-time experiment in unprecedented circumstances."

App for Reporting Abuse

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

A release from the University of Rhode Island:

The incidence of sexual abuse of people with intellectual and developmental disabilities is alarming. A 2018 National Public Radio investigation, citing previously unpublished U.S. Justice Department data, found that people with intellectual disabilities are seven times more likely to be victims of sexual abuse than people without disabilities.

Krishna Venkatasubramanian, an assistant professor of computer science at the University of Rhode Island, is looking for a way to help through technology. Venkatasubramanian has teamed with the Massachusetts Disabled Persons Protection Commission to develop an app-based tool to help people with intellectual and developmental disabilities better report sexual abuse. His work is funded by a three-year, $380,510 contract with the Commonwealth of Massachusetts, part of a grant from the federal Administration for Community Living in the U.S. Health and Human Services Department.

“It’s a terrible problem. Abuse is rampant in the community, and there are a lot of obstacles to reporting abuse,” says Venkatasubramanian. “Our goal is to build a tool that makes reporting easier, but also teaches folks how to recognize abuse and what they should do.”

“Violence against people with disabilities is a frequently unrecognized and under-reported problem that has reached epidemic proportions,” says Nancy A. Alterio, executive director of the Massachusetts commission. “People with intellectual or developmental disabilities face significantly higher rates of abuse than the general population. Forty-nine percent experience 10 or more incidents, and shockingly, only 3 % of sexual abuse cases involving people with IDD will ever be reported.”

The app, which is scheduled to be available in 2021, will provide interactive information to help people with intellectual and developmental disabilities identify abuse, easily file a report, and take the appropriate steps in its aftermath to stay safe. In designing the app, Venkatasubramanian is collaborating with the Massachusetts commission, the Department of Developmental Services, and Massachusetts Advocates Standing Strong, a statewide self-advocacy organization run for and by people with IDD, along with the input of clinicians, caregivers, experts and the future users of the app.

Deb Lloyd, project coordinator with Standing Strong, says there is a great need for the app. People with IDD are at heightened risk of being abused, she says, and many times abusers are people they know, adding difficulties to reporting abuse. At the same time, many in the population lack an understanding of what constitutes abuse.

“This is an amazing project,” Lloyd says. “Learning about abuse will be very helpful. Individuals will be able to access the information repeatedly and have a better understanding of the material. They also will be able to report independently. Fear of caregiver interference will hopefully be eliminated. The current reporting system is in writing or by phone and most cannot report without support or telling someone who will report on their behalf without judgment.”

Venkatasubramanian, whose research focuses on cybersecurity, personal safety and well-being, and accessibility with an aim to explore the frontiers of research in computer science to build usable technologies for marginalized populations, began work on the app in 2018 while teaching at Worcester Polytechnic Institute. When he heard the NPR report, he contacted local advocacy groups in Massachusetts and the commission to see how he could help.

In developing the app, Venkatasubramanian, along with psychologist Jeanine Skorinko, a professor of psychology at Worcester Polytechnic Institute, has been working with advocacy groups and talking with people with IDD to understand how they use technology and learn about their daily lives. He learned most were comfortable with technology and most used tablet-based apps. As the app is developed, prototypes will be tested by its intended users to determine what designs are most effective.

“There are a whole bunch of design guidelines that typically are followed when the audience has IDD,” he says. “You have to make sure you don’t have upsetting colors or you’re not giving negative feedback. Some users also may have other conditions. They may have vision impairment. They may have motor disabilities.”

“Our goal is to co-design with people with IDD, not just make them a recipient of the great things we build,” he adds. “We don’t believe we can build for a population unless they’re involved.”

Tom Howard, a URI graduate student in computer science, is helping to oversee the project, working with fellow graduate students Emiton Alves and Mary Wishart. Howard and Alves have been working on story-board-like prototypes of abuse-awareness information, researching how to make it more engaging for users. “This project resonates really deeply with me,” says Howard, of Smithfield, Rhode Island. “I come from a family that’s done foster care my whole life. So, when I heard about a project that would give me an opportunity to potentially help so many people, it all just fell into place for me.”

Much of the foundational information needed to design the recognition and response functions is already available, including using instruction from a commission workshop tailored to educate people about abuse and how to protect themselves. For the reporting tool, Venkatasubramanian and Skorinko will survey clinicians and caregivers to understand the factors around abuse and how they might affect a victim’s ability to report abuse.

“We have to understand the abuser’s mindset, the victim’s mindset, their lifestyle, the circumstances around the abuse,” he says. “We want to build an app that allows victims to report abuse as safely as possible.”

When completed, the app’s reporting function will assist individuals in reporting abuse to the Massachusetts Disabled Persons Protection Commission through its 24/7 hotline or the internet, Alterio says.

“The hotline number could be preloaded into the app so a user would not need to find the number,” says Alterio. “The app will also work with our soon-to-be new web abuse reporting portal. Individual pre-loaded information, such as name and contact information, could auto-fill the abuse reporting form and make it easier to use the portal. Once the report comes in, the cases will proceed through the commission’s usual screening, referral, and/or investigation processes.”

While the app is being designed to be used through the Massachusetts commission, Venkatasubramanian says its recognition and response functions will be universal and its reporting capability could be adapted for use in other states.

Microsoft and Hiring Practices

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.  

Maitane Sardon at WSJ:

“We realized candidates with autism don’t get through the initial phone screen because they may have yes or no answers or they may not elaborate on other skills,” says Neil Barnett, director of inclusive hiring at the Redmond, Wash.-based company. So in 2015 Microsoft decided to launch an autism hiring program that included adapting its hiring process to the specific needs of people with the condition.

The changes include allowing candidates with autism to apply via a special email and skip the initial phone screening. The company also gives such candidates a chance to do a practice interview and get feedback from recruiters before doing the official one. And finally, Microsoft allows them to code using their own laptops instead of doing it on a whiteboard in front of recruiters and other candidates, which people with autism have said makes them feel very nervous.
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Since the launch of the autism hiring program, Mr. Barnett says some of the procedures—such as allowing candidates to code on their own laptops—have been adapted by hiring managers in other parts of the company and outside Microsoft too, thanks to Autism @ Work, a coalition Microsoft co-founded with SAP SE, Ernst & Young and JP Morgan Chase & Co. to help other employers put similar programs in place.

Microsoft has hired over 100 employees with autism across different teams through its program. They hold various positions including software engineer, data scientist, content writer and finance-team member.

Daivergent

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.  

Ellen Rosen at NYT:

Byran Dai was 24 when he promised his mother, who passed away less than two months later, that he would look out for his younger brother Brandon, who is autistic. Brandon, 15 at the time, was receiving special education and social services, but Mr. Dai knew that by 22, his brother would phase out of the services and education provided by the state.

“In the autism community, we call that ‘falling off the cliff,’” Mr. Dai said. “It’s what a lot of families are worried about.”

Like so many entrepreneurs inspired by personal experience, Mr. Dai’s concern for his brother ultimately became the genesis for a new business. In 2018, Mr. Dai co-founded Daivergent, a start-up that is connecting tech companies with a pool of candidates on the autism spectrum. The company already has 20 corporate clients and has helped 75 people find work. There are about 1,100 candidates in the Daivergent pool.

The employment rate for individuals on the spectrum — even for those who have finished college — is extremely low. Statistics vary, but according to Anne Roux, a research scientist at the A.J. Drexel Autism Institute at Drexel University, about 50 percent of those on the autism spectrum have had at least one job since high school, but often that job is a low-paying part-time position. For those with greater impairment, she added, only 14 percent have employment in the community in which they live.

Working in AI

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

John Murawski at WSJ:

Businesses scrambling for artificial-intelligence talent are tapping an unusual resource: people with autism.

Ernst & Young LLP, Credit Suisse Group AG , Dell Technologies Inc., Microsoft Corp. , DXC Technology Co. and other companies are hiring autistic applicants for AI jobs through neurodiversity programs they have established. EY, a professional services firm, is also advising a dozen Fortune 500 companies on starting similar programs.

Autistic workers are often hyper-focused, highly analytical thinkers with an exceptional proficiency for technology, said several company officials who have hired people on the spectrum. Many are capable of working long hours on repetitive AI tasks, such as labeling photos and videos for computer-vision systems, without losing interest. Others have a high capacity for logical reasoning and pattern recognition, enabling them to systematically develop and test AI models.

Demand is soaring for workers with skills in AI, data science and related areas. CompTIA, a tech trade group, said in June that the IT jobless rate fell to 1.3% in May, a 20-year low, intensifying competition for scarce talent.

Meanwhile, many autistic adults lack jobs. About 42% of autistic students who had special education in high school had no paid job in the first six years after leaving high school, according to a 2015 study by Drexel University researchers.

All good, but important to remember that not all autistic people are tech whizzes. Many have their strengths in other areas.