Preparing for Possible Isolation

This was adapted from a post on a Facebook group and includes my response to which I felt was necessary in a time of pandemic.

Dustin

I come from we Aspies (we little professors) were considered role models in our classrooms, and were quite scholarly, and also obedient at home, in school, in church and in public.

So I’m wondering how these people are going to manage, now that stores are running out of their favorite foods, and now that we are having curfews and quarantines. In other words, how will autistics who haven’t bothered to adapt going to deal with all this change?

-If an autistic elopes and breaks quarantine during a curfew or quarantine, what do you suppose will happen?

-And if your autistic tries to lecture a police officer who is trying to maintain peace and order, what do you think will happen?

-And if your autistic has a meltdown in public because his chicken nuggets are out of stock, what do you suppose will happen?

-And if a parent of an autistic is in dire need of medical assistance, what do you suppose will happen?

I really, REALLY want to know if you all are faring well, Do you think your lives will IMPROVE during the spread of this virus as the result of your stubborn refusal to take action in the areas I have mentioned, or do you think things will get worse?

A bunch of mostly unemployed, not romantically involved adult autistics who are living with their parents, or on government benefits.

So answer me this: If you know how to make your lives better, then why aren’t you making your lives better? There can be only two answers: Either you are lying when you say you know how to make your lives better, or you are just lazy. Neither is an acceptable attitude to have when people are fighting each others in stores over a single roll of toilet paper.

Do any of you really think anyone is going to put up with your tantrums and meltdowns now? Do you really think that these people are going to make exceptions for you when these neurotypicals won’t make exceptions for each other?

Wise up. Grow up. It’s the only way we’re all going to get through this crisis.

I’m in my 30s at the Genesis of Asperger’s, I had maybe one accommodation in public school because my parents fought tooth and nail for it. By my Junior year on my own I elected to fill into the mainstream of a high school of nearly 1,500. It can be done. I went to training school and was nearly self sufficient without accomodations. Later I went to community college, again without accomodations and while working part time and other necessitated duties.

Yes, I do have that same old job but if I didn’t love it, I wouldn’t be there and I get paid well to do it. I had other issues six weeks ago that necessitated me to move in with my parents until I get resituated.

I have seen it in action throughout the week in person autistics that have meltdowns because events are being cancelled. I used be that person until I learned the skills to become a adult. Yesterday, I got a call from my employer stating not to return to work for the time being after just being cleared to return (today was going to be my first day back) until this whole pandemic clears due to my employment being non-essential.

I have been a firm autism advocate all my life and even have a blog on it. However, my parents who I love graciously show me tough love . While staying with them I eat what they have and what is available.

No one likes to be told to stay isolated, but for the safety of our world it’s the best thing right now. Here we haven’t been told to do so but the signs are there. The local utilities ensured we would be connected throughout the outbreak. Technology is grateful. I have a lot of ideas when I likely have to be isolated. I got some books, movies, plan to author some. You have to be creative. You have to remain calm and listen to authories. My dad said it well today that we could be at war and be forced to do things. So be thankful. I communicated with my mentors about being frustrated about not being able to go back to work. They said they think God is telling me to take time for me and in my 34 years of living I have never done so. Everything happens for a reason.

I do understand that individuals have needs and it will be difficult for parents in the days ahead it will be difficult but it is a crucial time to gain the skill set because I’ve read where individuals are having difficulty, so brace yourself because I know it can be done and it isn’t easy but it makes a smoother family unit. Yes, there are individuals that will experience difficult items but this will teach everyone to be better prepared.

We’re not closing, we’re evolving – a tribute to employment and change

Tonight, I saw a post about a young woman with down syndrome working as a cart attendant at a Kroger and how some customers treated her, but she kept her composure and did her job anyway.

Likewise, this was my first job 17 years ago. My job also included cleaning, trash removal and bagging groceries. It wasn’t all sunshine and rainbows but at 18 and then making $5.15 an hour for 20 hours a week, I just did it as something to do. I only had the job for four months through a job shadowing program where the supporting agency paid the wages, something I later knew and now have a distaste for. Nonetheless it was work and when I was done I was glad.

Staying with that same organization for almost 17 years now, 16 at the same employment support program, and nearly ten years at my present employment position, I have garnered the skills necessary to work and am in what is now defined as a supported position and can have the position as long as I shall choose, and plan to do so.

Nonetheless, today is a monumental day as that store I first worked in 17 years ago hasn’t been under the same brand or management for 15 of those years, yet this day is bittersweet. The store is now a locally based store that has been around since 1947 in the hills of Appalachia started in humble beginnings in the founder’s home providing low frills and low cost food to those in need. Later that site would evolve in what we would know as a strip mall, but instead was the localized version of wooden building and roofed with tarpaper with haphazard construction. Nonetheless, it generated millions in nearly 50 years and as building code could no longer support it, the store I worked for would move to the county seat and become the flagship store of that owners set of stores under its brand.

However as the years would draw, I would continue to shop there, and memories would always remind me of where I stated my employment journey. That local business would open a mini store in the neighborhood some years before I moved here last year, and at that time when I first moved here you could sense a change as the building, a retrofitted office building terminated the leases of other tenants in the complex, before having constant construction over the past year.

Last summer an announcement was made that a bakery and cafe (like a Panera or Starbucks) would open adjacent to this store and it did with some fanfare a few months ago and I do like it as it is a nice addition to this neighborhood. However, in the mini-store and old supermarket, you could sense little by little change was happening.

Now I am not a liker of change, and this business as my local grocery supplier made this difficult. Things I ordered through the online grocery service were oftentimes unavailable. Things were moved in both, stores – often, I knew it was the beginning of the end

Then two weeks ago – the news came on Facebook

The store I started my employment in would be closed and operations would evolve between their first site as they constructed pole-type buildings there and the new bakery and the store in my neighborhood, which they claim would triple in size. Yet, everyday I visit the market to grab something and yet something is different, not to mention their old mentality of plastic and buckets on the floor to overstimulate the senses, let’s hope its a transition.

Nonetheless that supermarket that I worked in 17 years ago is closed for now, but as many things in our lives, we must put a close to the past and learn and grow from it – along with a evolving business that I grew up on, we must adapt and move on.

Measures of success for adults with autism need to mature

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Over the past 20 years, my colleagues and I have watched a group of toddlers suspected of having autism grow into adults. By working with these individuals for such a long time, we’ve been able to see how their skills and behaviors differ as children and how these individual differences change over time.

We are pretty good at measuring skills that are important during childhood. These include imitation and joint attention — when two people focus on a single object. But as children with autism grow up, it becomes more and more difficult to identify the aptitudes that matter most for their quality of life.

We can use standard tests to assess language skills and intelligence — factors that we know affect a person’s independence. But these fail to capture the excitement of a young adult with autism who has found a niche, whether it’s drawing anime, checking baseball stats for sportscasters or loading large dishwashers in a restaurant. Similarly, standard measures and questionnaires may not reflect the frustration of a person who doesn’t succeed in school or struggles to find work.

One fairly accurate measure of progress toward independence is a person’s adaptive skills. These reflect the extent to which an individual takes care of him or herself, with a focus on hygiene, eating and communicating basic needs.

Slipping skills:

One measure of adaptive skills, called the Vineland Adaptive Behavior Scales, is a caregiver interview that measures a person’s ability to function day to day. For instance, it contains questions that assess daily living skills such as hygiene, cooking and getting dressed, as well as community functioning, such as using transportation and buying things. It also measures independence in social interactions — calling up a friend, offering help to someone — and communication skills.

In a study published earlier this year in Autism, we tracked Vineland scores for 179 people with autism as they aged from 2 to 21 years. We then grouped the participants based on the change in their scores over time. We wanted to see what other factors predicted scores on the Vineland, our measure of outcome.

We found that some aptitudes — such as language comprehension and nonverbal cognition — tested using other measures are associated with good daily living skills and independence in adults with autism just as they are in people without autism. In addition to these more general factors, specific difficulties in social development, communication and other realms influence the daily living skills and independence of people with autism.

Some of our findings point to alarming declines over time. For instance, we found that young adults who have more limited cognitive abilities use fewer daily living skills at age 21 than they did at 18. Two types of skills in particular seem to decrease: personal skills, such as taking a shower, and community skills, such crossing a street or showing a sense of privacy. The latter involves knowing what sorts of activities you can do where, for example.

Because the Vineland does not measure a person’s ability to do something, but rather what a person typically does, we expect that these young adults aren’t losing their skills, but instead are having fewer opportunities and less motivation to use them. Perhaps these individuals have less frequent chances to cross streets, for example, because they go out only rarely. Or they may be less inclined to take a shower because they feel that no one notices how they look other than their parents.

Meaningful measures:

We also found that adults with autism whose caregivers sought out and participated in early interventions have stronger adaptive skills than those whose parents weren’t as involved. In our sample, a caregiver’s involvement in this way had a stronger effect than which therapy they sought or even the total number of hours of treatment during the preschool years.

We don’t know whether this effect reflects the parents’ determination and availability for interventions, or a child’s access to interventions. Either way, however, it suggests that parents who were involved in learning with their child when the child was young are better equipped than less-involved parents to help their son or daughter develop independence and daily living skills as adults.

More targeted research, such as studies that test methods for supporting adaptive skills, may point us toward the best ways to prepare children with autism to participate in the activities that make young adult life meaningful. As educators and clinicians help children with autism develop certain skills, they should keep in mind that some of the strategies that are useful for children with autism may be less relevant to adolescents and adults.

Further research may shed light on other features that make life fulfilling for adults with autism. Our current tests capture reasonable benchmarks, such as language skills, academic achievement, economic independence and an absence of psychiatric disorders. But these targets may not reflect all of the aspects of a positive life.

The opportunities available to teenagers and young adults more generally, such as college courses, internships, extracurricular activities and sports, may not be accessible, appropriate or appealing to those on the spectrum. With the help of families, autism programs and centers are working to extend the types of growth opportunities available to individuals with autism. Our work underscores the importance of these initiatives as well as the need for better ways to assess the quality of life of young adults on the spectrum.

Catherine Lord is professor of psychology at Weill Cornell Medicine and founding director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital.

Originally published on Spectrum

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Young adults with autism flounder in face of service gaps

I am the mother of Elijah, a 25-year-old young man on the autism spectrum. When he received his diagnosis at age 4, following two years of terrifying seizures, I was teaching German literature at Bard College in New York. I loved being a professor, but when Elijah’s struggles began to have a greater impact on his and my daily life, I chose to switch careers and concentrate on education and advocacy — for him, and also for other children with autism.

During Elijah’s time in school, I saw gaps in knowledge and help for those on the spectrum. Although my focus at the time was on children, the lack of services has persisted, undermining a whole generation of youth with autism through their school years and into young adulthood.

This topic is of urgent importance: An estimated half million young Americans with autism will make the transition to adulthood over the next decade. A report released in April captures the story of this overlooked generation in hard numbers.

When Elijah was 9 and 10 years old, he was repeatedly bullied by a group of students at his public school. Yet he received little support from teachers and administrators, who were largely untrained in dealing with students with autism. He began having difficulties in the classroom. He had frequent outbursts, saying he wanted to kill himself, but teachers dismissed his behavior as a de facto expression of autism rather than as a sign of a communication deficit that proper support strategies could help remedy.

Something had to change — and fortunately, it did. With generous funding from a local philanthropist in our hometown of Woodstock, New York, and with cooperation from the school district, I helped build a nonprofit educational program for middle and high school children on the spectrum. The program drew students from nine local districts. Within weeks of opening in 2002, the Autistic Strength, Purpose and Independence in Education School, or the ASPIE School as we called it, was already at capacity — 8 students the first year and 16 the second.I read his outbursts as the cry for help that they were. At the end of fifth grade, Elijah became severely depressed. He often refused to go to school and, once there, was repeatedly sent to the school psychologist, who conducted the mandated suicide assessment over and over. Yet none of these professionals gave him ways to confront the challenges that define autism.

Telling statistics:

I should have known that we were onto something when families from across the country began calling the school, wanting to move to our community so their children could enjoy a more positive school experience. It wasn’t just the academic curriculum, although this was designed specifically for children on the spectrum. Teachers supported communication and social skills development in the classroom. Educational staff also empowered students to advocate for themselves in the classroom and outside of school by bolstering students’ knowledge about their disability.

Home truths

Perspectives of a woman and mother with autism. Read more columns »

The need for these kinds of targeted programs and career services has grown enormously. Two decades ago, when Elijah received his diagnosis, just 4 in 10,000 children had an autism diagnosis. Today, according to the U.S. Centers for Disease Control and Prevention, the rate is roughly 1 in 68.

In April, the A.J. Drexel Autism Institute in Philadelphia published the first report documenting the effects of insufficient support for young people like Elijah. The report exposes a dramatic drop off in services, what it terms a “services cliff” that young adults experience as they transition from secondary education into the larger world.

The key findings of the 68-page report read like the story of Elijah’s life, validating what many families know is amiss. The findings also quantify the implications of systemically ineffective planning for the transition to adulthood and reveal the hardships young adults face as they make their first, fledgling attempts to negotiate life after school.

Like Elijah, roughly half of his peers are bullied in school. Only 58 percent had a transition plan in place by the federally mandated age of 16. (Even though I was working in the field, Elijah never had an adequate plan at any age from the public school.)

Approximately one in four young adults on the autism spectrum, my son included, receive no services that could help them become employed, continue their education or live independently. More than one-third are “disconnected during their early 20s,” the researchers found, meaning they never get a job or continue education after high school. Elijah experienced this same isolation in his early 20s.

The biggest deterrent to developing evidence-based programs for people with autism is the lack of available data. “Our situation is like driving a car through the fog with no dashboard,” says Paul Shattuck, director of the institute’s Life Course Outcomes Program.

Looking forward:

As hard as our struggles have been, it is my nature to be hopeful about the future. I hope that the alarming results from the report will lead to more productive solutions.

Some organizations have already begun establishing programs that use evidence-based methods to anticipate the needs of young people transitioning into adulthood.

For example, Phoenix-based First Place Arizona creates and assesses solutions for employment, postsecondary education and living arrangements for adults with autism and other disorders. Ascendigo, Inc. of Carbondale, Colorado, is another progressive solution, offering varied challenges in outdoor education and sports for adults with autism.

The Drexel Institute is embarking on a project that will examine how various groups within the autism community — adult service providers, researchers and people with autism themselves — think about outcomes. “How measures are applied is all over the map,” says Anne Roux, who led the institute’s report, “most often with no input from adults themselves, families or communities.”

People with autism are also serving as their own change agents. The Autistic Global Initiative, a program I direct for the nonprofit Autism Research Institute, is made up entirely of adults with autism working in the disability, medical, advocacy and education fields. The initiative develops training programs and provides advice to organizations from the very people they aim to help.

Three years after I started the ASPIE School, a budget crisis at the partner school forced our program to close. Elijah moved to a private school and later, at age 20, worked hard to complete his high school equivalency. He diligently sought employment and worked at small jobs for brief periods, completing a few community college courses and earning mostly As and Bs.

As he celebrated his 25th birthday last month, Elijah also marked his first full year of part-time employment clearing tables at a restaurant in Woodstock. He rents a studio apartment and makes ends meet on modest paychecks and social security income. He calls me every few days, often to share stories about his coworkers — who value his sense of humor and work ethic — or to solve some problem he’s grappling with. As he takes on more responsibility at work, for example, he’s trying to figure out how to ask his boss for a raise.

Elijah and his peers with autism have always been overachievers working against great societal odds. Now we have the national indicators report as proof of that perspective. It’s up to schools and publicly funded agencies that support people with disabilities to take this information as a call to action and to begin directing young people with autism toward employment, community engagement and fulfilling lives.

Originally published on Spectrum

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The twenty-something free fall

Isaac Law spends most of his time on his computer, watching movies on Netflix, poring through Facebook posts or working on his latest project, a web comic called “Aimless” about two friends named Ike and Lexis who leave Earth to join a band of space pirates.

Law is 24, but he neither has a job nor attends classes. He briefly worked as a volunteer, stocking shelves in a comic book store, but that didn’t work out. “It was a very disorganized place,” he says. He also tried attending art classes. That didn’t pan out either. “I have massive authority problems,” he says.

In many ways, Law sounds like a stereotypical millennial — unwilling to work a dull job to pay the bills, and preferring to spend time on his creative interests. But Law’s path to an adult role and responsibilities is complicated by the fact that he has autism and bipolar disorder.

His mother, Kiely Law, is frustrated that he has, as she sees it, “plateaued” since graduating from high school at age 20. But as research director of the Interactive Autism Network, a registry for autism studies, she also knows that many young adults on the spectrum share her son’s difficulties transitioning to adult life.

“I think one of his challenges is that, like many adults with autism, he has some extremely narrow interests,” she says. “The opportunities that exist don’t fit what he’s interested in. And if you have difficulties relating to other people, and with social skills, and difficulties with transportation, it just snowballs.”

A giant wave of children diagnosed with autism in the 1990s are now reaching adulthood. Researchers estimate that about 50,000 young people with autism turn 18 every year. What’s clear is that this is a perilous phase for many of them, with at least three times the rate of social isolation and far higher rates of unemployment compared with people who have other disabilities. Whereas the majority of young people with language impairments or learning disabilities live independently, less than one-quarter of young adults with autism ever do so.

“There are a number of pretty good studies that describe fairly well the difficulties that young adults with autism face, in terms of unemployment and underemployment, in terms of comorbid mental health issues, in terms of not getting the services they need,” says Julie Lounds Taylor, assistant professor of pediatrics at Vanderbilt University in Nashville, Tennessee.

So far, however, there’s been little research to determine what sort of support and services these young people need. Instead of getting extra help during these vulnerable years, they face a major impediment: a sudden drop-off in support at graduation, when federally mandated services abruptly end — a phenomenon that researchers call ‘the services cliff.’

It may be that with enough help, some young people on the spectrum would regain their footing as they continue to mature. Advocates and parents are pushing scientists to investigate practical questions that will improve the often grim outcomes for these young adults. Although the problems they face are well documented, the causes and potential solutions are unclear. Some autism researchers are collecting data they hope will illuminate just why so many young adults on the spectrum are struggling — and what they need to get through this transition. “We need to know what puts people on a path of upward mobility,” says Taylor.

Over the cliff:

The period between ages 18 and 28 is critically important in establishing a foundation for adult life. For young people with autism, these years tend to be especially challenging. More than 66 percent of young adults on the spectrum do not secure a job or enroll in further education during the first two years after high school. Even two to four years later, nearly half are still not working or in school, according to the 2015 National Autism Indicators Report, produced by the A.J. Drexel Autism Institute in Philadelphia. And they struggle in other ways: One in four young adults on the spectrum is socially isolated, according to the report; only one in five has ever lived independently by their early 20s. Many also have two or more physical or mental health conditions in addition to autism, making it difficult to meet these milestones of adulthood.

In fact, the limited number of studies on young adults who have autism show that many lose ground once they leave school. While teens with autism are in high school, their autism features generally tend to improve over time, but progress slows dramatically after graduation. In a 2010 study, researchers found that once adolescents leave school, any improvement they had shown in repetitive behaviors, reciprocal social interactions and communication basically stalls. Meanwhile, those who had shown progress in problem behaviors such as self-injury and aggression backslide. “We found that when they left high school, that improvement slowed down a ton and in some cases even stopped,” says Taylor, who led the study.

The likely reason, Taylor and other researchers say, is that support for adolescents vanishes after graduation.

During high school, 97 percent of young people on the spectrum get some type of publicly funded help, according to the Drexel report, which is based on U.S. government statistics. For example, at age 17, about 66 percent of individuals with autism receive speech and language services; after high school, that dwindles to 10 percent. Similarly, the proportion of those receiving occupational or life skills therapy diminishes from more than half to just under one-third.

For many years, these problems weren’t even on researchers’ radar. “For the longest time, people were thinking about children and how to intervene in childhood,” Taylor says. It wasn’t until about a decade ago that she and other researchers began working to fill the gap — and encountered daunting obstacles.

For example, Vanderbilt University has an extensive autism research program, so when Taylor began studying young adults in 2009, she thought it would be easy to connect to potential study participants through the network. “I didn’t expect at all that it would be difficult to find families,” she says. She found that, in fact, it was “incredibly difficult” and much harder than persuading young children or their families to participate.

That may be because the autism community tends to be more tightly knit among families with younger children. Once children are older, families may not be as eager to participate in research because they no longer anticipate the kind of ‘quick fix’ they may once have hoped for.

Funding agencies also tend not to be interested in supporting studies that might help to tease out why the years after high school are difficult and disorienting, researchers say. That’s especially true for studies on services to help young people with autism transition to adulthood.

The overwhelming majority of autism research is focused on children. Between 2008 and 2012, only 1 percent of federal research funding for autism went to study issues of adulthood, according to a U.S. Government Accountability Office report. “The emphasis on brain and biology really pulls away from those kinds of studies,” says Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital in New York City. “It’s very hard to get funding for something that doesn’t have some kind of biological marker.”

Funding agencies also generally prefer research that explores ‘mechanisms’ underlying autism. That typically implies a biological approach, which further limits the scope of research, Lord says. “Most [scientists], when they are looking for mechanisms, are looking for things that can be easily translated into animal models.”

She proposes that scientists could interpret the idea of a mechanism more broadly, evaluating therapies that improve conversational skills or other aspects of daily living. Some evidence indicates that adults with strong adaptive living skills — such as communication and social skills, personal hygiene, cooking, cleaning and ability to use public transportation — are more likely to be employed and to be better integrated into their communities than those with poorer skills. But so far, not much research has explored adaptive functioning during the transition to adulthood for people on the spectrum.

Young adults have participated in numerous autism studies over the years — many imaging studies have scanned their brains, for example. But those studies, although interesting to researchers, typically don’t have much direct impact on the participants’ quality of life.

In some cases, the young adults themselves may be resistant. Isaac Law, for one, doesn’t believe that there is such a thing as ‘autism.’ “Most people labeled autistic are just plain oddballs,” he says. He rejects the diagnosis and has no interest in participating in studies — even though both his parents are autism researchers.

“Health policy research has more to offer this group of individuals.” Kiely Law

Growing pains:

In 1990, Lord began tracking a large group of children with autism, starting at around 2 years of age. Her original intent was to determine whether it is possible to diagnose autism in children that early, and to explore whether the diagnosis remains stable into school age. About 130 people, now in their mid-20s, remain in the study. “About 45 people are verbal and really able to talk about what’s going on,” she says. The rest are intellectually impaired.

Over the years, Lord and her colleagues have collected information on the participants’ behavior, adaptive living skills, educational achievements, daily activities, and their mental and physical health.

The team has found that the adaptive living skills of people who have both intellectual disability and autism continue to improve from age 18 to 26. “That’s one of the things that’s been encouraging for us,” she says. “They are still learning all kinds of things.” One reason for this is that people on the spectrum with intellectual disability have access to a wide range of services even after they leave school. “There are places for them to work when they come out of school, there are service systems in place to help them find things to do during the day, to find places to live if they don’t want to continue to live with their parents or they need help, and to get transportation.”

Paradoxically, the picture is bleaker for young adults with autism of average intelligence or above. Some who do well in high school seem to crash when they get to college, Lord says. And those who are not in college or working struggle to find ways to fill their suddenly empty days. These young people express more distress about their circumstances than do those who have intellectual disability. Their parents are more likely to rate them as anxious or depressed compared with parents of young people with both autism and intellectual disability.

“It’s much more difficult for the brighter, more verbal people with milder problems,” Lord says. Their own expectations — and those of their parents — are higher, for one thing. But they also face a more abrupt change in lifestyle, Lord says; they no longer enjoy the kind of structure and support that characterized their high school years. On their own for the first time in their lives, many flounder. And other than their parents, there’s no one around to help them navigate this sea of changes.

Few studies have probed just what sorts of help would actually improve quality of life for people on the spectrum. A 2012 review identified 23 studies focused on improving services for adults with autism; in 12 of those studies, the average age was 30 or younger. Most of those studies focused exclusively on employment, exploring job-skills training or support for people who already have jobs. Not a single study explored the range of services that people with autism might require, from medical and psychiatric services to transportation. States seldom pay for case managers to coordinate services, for people over 18 who don’t have intellectual disability.

Lord says that one big problem with young adult research is that it’s difficult to define what qualifies as a good outcome for a young person on the spectrum. A bright young woman with autism might find a job that doesn’t match her academic qualifications — but should that automatically be considered a poor outcome? What if she’s happy in the job?

“It makes us uncomfortable because it seems very arrogant for us to say, ‘This is a good outcome,’” Lord says. “That’s part of the complexity of this kind of research.”

These young people have their own priorities for the kind of research they believe should be funded, and those often differ vastly from what scientists or funding agencies would say. “For our independent adults, one of the top priorities is employment services: better support systems within the work environment,” says Kiely Law, who was involved in a 2015 survey of nearly 400 adults with autism and their caregivers in the Interactive Autism Network. The survey included people aged 18 to 71, with most in their 30s, but people of all ages agreed on this point.

Another priority was educational opportunities beyond high school, and the need for special support in that environment, Law says. An informal survey she carried out last year with a community advisory council turned up similar concerns. Apart from access to mental health providers, people on the spectrum report their research priorities to be work, education, bullying and discrimination, rather than biomedical research. But without evidence-based studies evaluating the cost and effectiveness of such programs, it’s unlikely that legislators will fund them.

Survey participants also mentioned the difficulty of finding healthcare providers — particularly specialists in mental health — skilled at working with adults on the spectrum. Once again, however, there is little information on how medication and other treatments for anxiety, depression and attention deficit hyperactivity disorder — all common among people on the spectrum — should be provided to adults with autism. “Health policy research has more to offer this group of individuals,” Law says.

Working it:

Sara and Abby Alexis, 24-year-old twins, both have autism. Abby takes a class at the local community college and works one day a week in a hair salon where she folds clothes, sweeps hair and washes dishes. She has just started a second job at a café. Sara just completed a continuing-education art class and has two part-time jobs: folding towels at a fitness center and packaging soap at a personal care products company. They are two of the lucky few to have found jobs that work for them — thanks to a program launched by parents who solved the service-cliff problem on their own.

The sisters got their jobs through Itineris, a community-based program created in 2009 by nine Baltimore families who realized that after high school graduation, there would be no specialized services available to help their children on the spectrum become more independent. In addition to providing job training, Itineris staff take the 70 or so young people in the program on outings to restaurants, amusement parks, movies and bowling.

Abby and Sara both love Itineris. “It’s good to make friends and be social,” says Sara. Abby has a boyfriend, whom she met at Itineris, and many friends. She is hoping to move into an apartment with her older sister in a year or two and become even more independent. “I want people to treat me like an adult, not like a kid,” she says. Working a paying job where she makes $9 an hour is part of that.

Researchers tend to focus on employment among young adults with autism for one simple reason. “We find that for many people, employment is not just about a paycheck. It’s about opportunities for social inclusion, meeting other people, for self-expression and identity formation,” says Paul Shattuck, director of the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute.

But without the help of an organization like Itineris, finding a job is tough — and sticking with a job even tougher. Though about half of young adults on the spectrum work for pay at some point after high school, only one in five works full time, with average earnings of around $8 per hour. Their rates of employment are lower than those of people with language impairments, learning disability or intellectual disability alone.

Young adults with autism are more likely to work for pay if, like Abby and Sara, they are from middle- to high-income households and have decent conversational abilities and functional skills. Finding a job or being enrolled in school is no guarantee of consistent employment or earning a college degree, however. A 2015 study of 73 young adults showed that 49 either worked or were enrolled in some form of post-secondary education, typically college classes, at some point over the 12 years following high school graduation. However, only 18 were consistently employed or in school during that time. And only 3 of the 31 people who graduated from college found jobs in their field of study; most were either unemployed or had unskilled jobs in food service, retail or maintenance.

For young people from working-class and poor families, joblessness isn’t really an option, adds Shattuck. Last year, he and his colleagues launched a partnership with Philadelphia public schools and a state social services office to provide full-time internships and job training for young people with autism. The program is designed for people with intellectual disability; one participant is nonverbal, he says. Still, their families expect them to secure paying work of some kind. Most of the participants are African-American and come from families of modest means, Shattuck says. Families must apply to the program. “More importantly, each youth has to express a clear willingness and interest in working and learning,” he says.

The participants — only eight so far — rotate through internships in the Drexel University campus bookstore and other offices, with the aim of learning skills they can transfer to future jobs. “These are not volunteer ‘make-work’ positions,” Shattuck says. Though it is too soon to assess whether the program can help participants stay in jobs, Shattuck says that employers are pleased so far. “We’ve had tremendous buy-in from Drexel staff and supervisors.”

The researchers hope to expand the program next year. Funding comes from state and city agencies that already provide support for adults with intellectual disabilities, meaning that “it’s budget-neutral for those agencies,” Shattuck says. That should make it easier to replicate the program in other cities and states.

The limited research on young adults with autism makes it challenging to advocate for more services for them, says Shattuck. Legislators and their staffers all ask the same question: What proportion of young people on the spectrum will be able to live independently, and what proportion will need significant care for the rest of their lives?

“We don’t have the successful framework, the infrastructure, the tools to even answer those basic questions,” he says.

“We need to know what puts people on a path of upward mobility.” Julie Lounds Taylor

New beginnings:

One day when Renee Gordon’s son Alex was 21, he bolted out of a moving car in the middle of the freeway. In order to subdue him, the police eventually threw him to the ground and handcuffed him. The incident was the culmination of a bad period for Alex, who has autism and is intellectually disabled and nonverbal. His anxiety had become particularly intense following a series of significant changes, including the departure of a longtime caregiver and the loss of school friends. After the incident, his parents, approaching retirement age, decided that they could no longer provide the structured environment that Alex needed at home. They were worried that he would have difficulty adjusting, but his experience has revealed that for people with autism, change and growth can stretch far beyond the teen years.

Alex moved to a group home in June 2014, where he now lives with two other men with disabilities and their caregiver. Gordon is astonished by the changes in her son. “It has been the most amazing transition for him,” she says. “He is far more independent, far more flexible.”

Alex still requires 24-hour care. But he has learned to zip his coat and pants, is far less fussy about food, volunteers at Meals on Wheels and attends social functions with his housemates and other peers, including a trip to the beach and a monthly nightclub at the League for People With Disabilities. And he finally has friends.

“We think that just because school ends at 18 or 21, that’s the end of learning,” Gordon says. But seeing the changes in her son, and recalling stories she has heard from other parents over the years about the great strides their adult children made in their 20s, she wonders if young adulthood might be the perfect time to teach new skills.

Shattuck says that he too has heard many “second wind” stories from parents about young adults with autism in their 20s and 30s. It leads him to ponder two fundamental questions: What are the conditions that facilitate this unexpected progress — and what’s going on in brain development that allows it to happen?

Shattuck doesn’t consider basic research and studies of services to be at odds. Understanding how the maturation and aging processes plays out in people with autism throughout life, he says, will improve their health, well-being and quality of life, as well as contribute to understanding mechanisms at the biological level. “It doesn’t have to be one or the other,” he says. “The point I try to make when talking to fellow scientists is: Yes, there is clearly a discrepancy between what the community wishes was funded and what actually gets funded. But I think it is a mistake to conclude that there needs to be a difference between those two goals.”

Gordon, who is married to a neurologist, agrees. Biological studies are important; so is research focused on what kind of help young adults like her son need right now, she says. “I would like more research into how you can make sure that these individuals have happy and fulfilling lives.”

For Isaac Law, happiness and fulfillment are represented by his web comic, which he hopes to publish by August 2018, when the Museum of Science Fiction opens in Washington, D.C. His dream is to be paid for his art as a cartoonist. “I would rather not get a job again,” he says. “I would just like to focus on my web comic if possible.”

The comic is a buddy comedy, centered around two friends who are inseparable. Law says he doesn’t have such a friend himself. The character of Lexis is based on his cousin, but, he admits, “we don’t talk to each other as often as we probably should.”

Originally published on Spectrum

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