Editorials

First published May 16, 2012.

On November 12, 2013, James Torrey Hill was found legally sane and guilty of first-degree murder, according to the Monterey Herald. Hill is scheduled to be sentenced on January 8, 2014 and faces a mandatory minimum of 25 years to life.

A trial begins in California this week that has my attention. It’s not one that the national news media are covering, and the outcome will go unnoticed by most. A young man, James Torrey Hill, is facing a jury trial in the Superior Court of California, accused of killing a young autistic man, Matthew Paul Finnigan, in the fall of 2010.

The Monterey Herald reported testimony from police officers given at Hill’s hearing in February 2011. (Stories on the incident are available via archive search.) “Officer Jeff Gibson testified Hill answered the door [to his apartment] wearing blood-splattered shorts. At the end of the hall, he saw Finnigan crouched over, covered in blood, saying Hill had stabbed him without warning or cause,” the Herald story notes. The newspaper article goes on to recount testimony indicating that in Hill’s statement to police he said that he had been having hallucinations and had “been dealing increasingly with murderous urges in the weeks leading up to the attack.” Finnigan would die from stab wounds after being airlifted to a San Jose hospital. Hill went on to plead not guilty.

I am particularly interested in this story for a couple of reasons. The obvious one is that the victim was an autistic adult. At the time of Finnigan's death, both men were enrolled in a postsecondary program for students with disabilities called College Living Experience (CLE). College Living Experience has a number of centers across the country—Finnigan and Hill attended one in Monterey, California. And at the time of the incident, I was the Director of the CLE center in Rockville, MD.

When I learned about the fatal stabbing at CLE-Monterey, my heart dropped. It shook me to my core. I know that my first response was as a parent. How must it feel to send your son to a support program, only have him to die allegedly at the hands of another participant in that program? My next response, frankly, was to be thankful it hadn’t happened at my center, on my watch. I felt terrible for the families involved, but my heart also went out to the CLE-Monterey staff and students who were dealing with such a tragedy.

And then I started to have other thoughts. I started to think about the admissions process at programs serving young adults with autism. What many people in special education and adult service admissions will tell you is that it can be difficult to accurately assess comorbidities. Many young adults with learning disabilities and autism have mental health struggles, due either to environmental stressors like bullying or from comorbid conditions like anxiety, depression, or mood disorders. What you see on the surface is not always what you get. In addition, some families do not include a complete mental health history with applications as they worry about admission denial. Then there are the fiscal pressures of running a resource-intensive program like those that serve students with autism. Decision-making gets complicated. 

In the coming months, Autism After 16 is going to turn its attention to mental health issues and autism. We are concerned that adults with autism are not getting their mental health needs met, and we are also concerned that because of behavioral issues, students with autism are often being lumped together in programs with students with mental illnesses that might not be compatible as regards treatment modalities. The lack of social fluency on the part of young people with ASD may not mesh well with program participants prone to extreme emotional response. Accounts indicate that Finnigan engaged in problematic online interactions. (Details can be found in an article entitled "Dragon Slain," published in the current issue of a California State University student publication called Scene Magazine.) The Herald reported testimony stating that Finnigan had a “bout with schizophrenia.” The paper also noted that “Two acquaintances told police disturbing stories about those preceding weeks. One of the men said he was watching television with Hill when Hill suddenly began choking him and asked him if he was ready to die. The man said he began to black out before Hill stopped. The other witness said Hill had told him he could kill Finnigan any time he wanted and get away with it.”

As an increasing number of students with autism leave high school in search of postsecondary options, we need to make sure we have choices available that are good fits. We need to be up front about comorbidities and we need to examine what types of supports young people with autism truly need. We also need to be aware that bullying—or in extreme cases, violence—can occur into adulthood, as noted in a recent UK survey. And as families, we need to insist that best practice in serving our young adults includes a real understanding of what it takes to keep them safe.

 

Editor’s Note: I resigned my position as Director of CLE-Rockville in November 2010 and left in February 2011. I gave a presentation on teaching strategies to CLE staff in May 2011 at which point my relationship with the company ended. 

First published on September 16, 2011.

As we’ve mentioned in several articles, existing adult services are generated by a variety of state and federal agencies. Creating a system of support for an adult on the spectrum is like piecing together a quilt. You take a bit from here, some from there, and stitch it together. And while many hands can work on sewing a quilt, one person must stand back, look at the unified whole, and determine how to fit pieces together successfully. 

In the medical and social services universe, that point person is often referred to as a case manager. The duties of a case manager are many, and can include locating, coordinating, overseeing, and evaluating services. A case manager must understand the variety and complexity of a client’s needs, and match services accordingly. A case manager must track progress over time, and make changes to service provision as needed. And a case manager must be able to keep fiscal imperatives in mind at all times.

Most adults on the autism spectrum would likely benefit greatly from good case management services. And while many people receive truncated versions of this through one agency or another, these efforts may not be holistic enough. Job performance may be examined, but without understanding medication management, success may be elusive. Training opportunities may exist, but without access to adequate transportation. Postsecondary education may be in the works, but sleep issues may interfere with class attendance.

So who do you get to be your adult child’s case manager? Depending on your location, you may be able to find a professional in your area who understands developmental disabilities, maybe even autism. If you are very, very lucky, you may even be able to access these services through public funding streams. But in all likelihood, your adult child’s case manager will end up being you, your spouse, or another family member. 

Wait a second, you exclaim. I’m just now wrapping up overseeing my kid’s IEP process.  And keeping track of his medical and therapeutic needs. You mean I can’t stop??

That’s right. You can’t stop now. Depending on your child’s level of independent functioning, you may be able to teach him how to take over some of these responsibilities. But for most parents of adults with autism, you or someone in your family will need to take on the role of case manager. It will undoubtedly seem like an enormous task. But it is a crucial one.  Effective case management should not be overlooked. It’s easy to get caught up in the day-to-day needs. But big picture requirements and coordination of services can’t get put on the back burner.

The good news is that you don’t have to have a degree in nursing or social work to be an effective case manager for your adult child. After all, you are the expert here. You have the benefit of knowing all the gory details of your kid’s strengths and weaknesses. You also can reflect on trajectory of lifespan services up to now. And, you’ve got a vested interest in the future. So your version of case management will focus not only on what’s happening today, but what tomorrow will bring.

A big piece of our mission at Autism After 16 is to help provide you with information to make you a more effective case manager. It’s a tough job, but somebody’s got to do it. Like it or not, the somebody is probably you.

First published on January 16, 2012.

Last week a 13-year-old boy with autism was arraigned on battery charges in Florida. Apparently, the boy threw a pair of headphones across a classroom and clocked his speech teacher in the head. She responded by pressing charges. The parents argue that the teen (who it seems also has mild intellectual disability) cannot be held responsible for his outburst because he was annoyed by another student talking out of turn. The SLP, who has not talked to the media, must feel as though turning to the justice system is somehow warranted—a choice that makes me wonder about the availability of other avenues of support for the student or for her.

This incident illustrates how polarized thinking about autism and behavior can be. And then there’s the increasing number of blogs and posts taking the viewpoint that all autistic behavior should be cherished and celebrated as representative of personality. That to do anything less is to devalue our children, to wish they were not who they are, to squelch individualism.

In my opinion, all of these perspectives are missing the behavioral boat. We need to be having a conversation about how parents and teachers help children with autism learn to self-manage their behaviors. Moving from childhood to adulthood is for everyone—autistic or not—all about learning to govern one’s impulses and choices. None of us gets to do whatever he pleases and function in society. Taking the perspective that a child with autism should not or cannot be asked to self-regulate implies the assumption that people on the spectrum are incapable of learning self-control. And isn’t this precisely the stereotype we’re fighting? The one that keeps our adults from being employed, from finding housing, and from being welcomed into community settings?

Part of the problem is that we seem to want to lump all autistic behavior into one basket. It’s either all good or all bad. And then our responses become extreme. We need to start making more careful, individualized determinations about behavior. In other words, for this particular individual, which behaviors need changing and what are realistic expectations regarding self-management at this time? This is precisely what we do with our neurotypical kids. We target problem behaviors based on who they are as individuals, and what their specific needs are to function better in their world. We push our typical kids to achieve their personal best. Shouldn’t we have the same confidence in our kids with ASD? We must not confuse different expectations with lowered ones.

As parents and teachers, we must first determine which behaviors are truly problematic. Problematic behaviors interfere with successful functioning in some way. If a behavior harms someone, it is pretty obviously problematic. But it’s also problematic if it keeps the child from being available to learn or if it gets in the way of wellness—for the individual, the family, or the community. Plenty of “autistic” behaviors, although seemingly unusual, are not interfering behaviors. We need to learn to discriminate—as parents, as teachers, as community members—between the two. And then we need to focus on teaching kids with ASD how to better handle the problematic behaviors themselves so that other people don’t feel obliged to.

Teaching self-management means that as parents and teachers we need to take the time to understand what’s driving problematic behavior. Often this requires help from behavioral or mental health professionals. And then we need to help the individual discover alternative, more successful behaviors whenever possible. Here’s the thing: You can’t teach absence of behavior. So simply trying to get someone to stop doing something doesn’t work. You need to help them find a better option to meet the need the problem behavior is addressing. 

We also need to learn—and then help our kids learn—how to get in front of a problematic behavior. We tend to operate in crisis management mode, especially in school settings. We try to manage a meltdown once it’s kicked into high gear, as opposed to teaching a young person to be aware of the signs that loss of control is on the way and what to do to help change the situation. And we really shoot ourselves in the foot when we focus on the non-problematic self-soothing behaviors that are occurring instead of analyzing what’s up with the “stimming.” Sometimes it’s precisely when we stop the self-soothing that we get a more intrusive, dangerous action.

Teaching our children with autism self-management skills—impulse control, frustration tolerance, endurance—matters. The ability to self-manage can be the difference between employment and unemployment, between residential options and nowhere to call home. Sometimes it can even mean the difference between freedom and a jail cell. We as a community need to demonstrate how to be thoughtful about the behaviors that are often part and parcel of autism. Which means that we need to acknowledge complexity of behavior and stop looking for easy answers. It also means avoiding rhetoric that fosters the notion that people with autism should not be expected to change their behaviors, regardless of the consequences of those behaviors. Maturity for all children—autistic or not—means learning to sometimes take oneself in hand. Even if the hand is flapping.

In a few years my son may enter the workforce. I’ve been trying to find the right message to convey to him now so that he may be successful finding employment. Recently I had the opportunity to attend an Employment Think Tank hosted by Autism Speaks that featured employers, service providers, researchers and self-advocates. The meeting left me feeling hopeful. There are high-quality companies—such as AMC Theaters, TIAA-CREF, Specialisterne, to name a few—who are employing, and looking to employ, more people on the autism spectrum. Furthermore, one can expect large companies that have contracts with the federal government to be looking to hire more people with disabilities by 2013, after new regulations for Section 503 of the Rehabilitation Act of 1973 are published in December. 

In my prior vocation, when younger associates sought advice about their careers, I pointed them toward choices that would allow them to build a knowledge base from which they could develop sought-after skills. As I listened to employers at the Think Tank talk about what they were seeking from future employees, I thought about what knowledge base our family should help our son build, and what “core skills” employers were seeking from employees with ASD. In our case, the knowledge base probably needs to include a sound understanding of my son’s strengths so that he, as well as my wife and I, can articulate these to potential employers or educators. The strengths should include specific skills and tasks that he does well, as well as areas of special interest. We should not assume that employers will discover his talents. As a corollary, we should also be aware of specific situations or stumbling blocks that we should look to avoid. Armed with this knowledge, we should build the following skill sets that employers mentioned during the Think Tank:

Dependability: A dependable employee arrives to work regularly and punctually. Therefore, we need to develop transportation skills—which may include driving, finding someone else to drive, or taking public transportation independently. Too often families attempt to develop transportation skills after employment has been secured, and resulting missteps make the employee appear unreliable to the employer. Dependable employees also accomplish tasks given to them, so we may wish to help our son develop task analysis skills so that he can break down his assignment into small, achievable steps.

Common Sense: This is a tough skill for our population to develop. Adults with ASD don’t necessarily “get it” reliably. We need to help our son become aware when he doesn’t understand what is being expected of him, and how to ask the questions he needs in order to clarify the situation. Part of this process may include developing effective self-advocacy skills, such as reminding employers to use specific instructions and avoid euphemistic speech if possible. An effective self-advocate seeks “reasonable” accommodations, and should also be willing to do himself what he is asking others to do.

Good Attitude: This is often easier to develop than common sense, especially if the job is in an area of high interest. Doing a job well ought to be a reward in itself. Helping to establish the old maxim, “any job worth doing is worth doing well” will be highly appreciated by potential employers. 

Workplace Navigation: The ability to navigate the workplace includes understanding what behaviors are appropriate in different situations. This will include an understanding of public versus private space. Most places at work are public, though one’s own cubicle or office is usually somewhat more private. When customers are present some behaviors may be expected that are not otherwise. Meetings are different events than breaks in the snack room. Touching coworkers must be done within prescribed rules or not at all, and interactions with coworkers will be different than interactions at home with family. Appropriate socialization at work may be very difficult to cultivate.

Most employers feel confident that they can teach job-specific skills, but these “soft skills” are the ones that our family needs to work on developing now because they will be needed in almost any workplace. I hope that if I can send the right message now, my son can find the right job in the future.

Medscape Today News yesterday published a video on the topic of teen drivers with autism. Entitled “Should Some Autistic Teens Drive?," the roughly four-minute piece features Dr. Flaura Koplin Winston of the Center for Injury Research and Prevention at the Children’s Hospital of Philadelphia (CHOP) discussing research on teen drivers and offering some suggestions in thinking about whether a teen with ASD should begin driving.

As the parent of two young adults who drive, I can attest to how hard it is to navigate this issue well. Getting a driver’s license is a rite of passage in the US, viewed as the first step toward independence. For ASD families, it can be more than that—it can be an indicator of “normalcy.” So an already complicated decision is often muddied by emotions. Autistic teens and young adults may have their own conflicting feelings about driving, from eagerness to severe anxiety. (Two of AA16’s columnists, Benjamin Kellogg and John Scott Holman, have written about their decisions to postpone driving.) Neither of our sons was ready to drive at age 16, and so we waited. It wasn’t a popular decision, nor a convenient one, believe me. But it was the right one for our kids.

My response to this video (and the embedded link to teendriversource.org) is that it’s a terrific launching pad for families and professionals to start talking about ASD and driving. It’s crucial for autistic teens and young adults and their parents/guardians to think carefully about driving readiness and to have honest conversations about how the decision to drive will be made. Having a conversation with your teen will tell you a great deal about how she views the process of learning to drive. Just because a teen can pass a driving test doesn’t mean she’s ready for the road. As the video points out, there are a number of challenges often specific to autism that may hinder the ability to drive safely. Thoughtful decision-making regarding readiness is crucial and could be life-saving. There’s no shame in postponing or foregoing driving—for anyone.

While a great conversation-starter for families, this video is actually intended for physicians. Transition educators would do well to give it a look also. Parents frequently seek guidance from professionals about driving readiness for kids on the autism spectrum. So professionals in the position of dispensing this advice should have something thoughtful to say. While there’s increasing research available regarding trends in driving among young people with autism—Winston references a CHOP study on characteristics of autistic teens who drive—much of it is descriptive, not prescriptive. That is, it tells us who’s driving, but not what works in helping autistic teens become better drivers. It would be great if professionals would help families of potential drivers look at the issue carefully, neither dismissing driving as out of the question, nor assuming that intelligence predicts driving ability. Winston provides some solid ideas, such as adding driving preparation to IEPs, having the teen evaluated by an occupational therapist (check with your private insurance company for OT coverage), and hiring a professional driving coach. (I can personally attest to the value of a good professional driving coach. Well worth the expense.)

The one thing that concerns me in all of this is how policymakers are hearing this conversation as it appears more frequently in the press. The easy road for legislators will be to create blockades to driving for young people with ASD rather than mapping out avenues for the acquisition of greater driving skills. We all know bad driving can be deadly, and many people with autism shouldn’t drive. But you don’t have to have autism to be a bad driver. There’s nothing wrong with increased rigor in evaluating who should be given a driver’s license, but let’s make sure we don’t simply shine the light on people with autism. Plenty of conditions impact one’s ability to drive. And since not driving can severely limit the ability to function as an adult in the community and often impacts employability, if we’re going to hand out fewer driver’s licenses, then let’s do so with an eye toward more available and reliable public transportation.

Deciding when and how to move forward with driving lessons for a young person with autism can be difficult. I urge parents to take your time and engage in conversation with your teen before you feel forced to make a decision. I urge professionals to contribute to this dialogue with thoughtful advice that keeps the individual and specific family in mind and to help families access supportive services. And finally, for any teens reading this, please do not use your cell phone while driving. But do use it afterwards to let your mother know you arrived safely!

On Wednesday morning, a 15-year-old Illinois boy with ASD, Stephon Watts, was shot and killed by police officers who responded to a call from the teen’s parents asking for help in managing his violent behavior. According to news reports, the boy didn’t want to go to school that morning. His father took away his computer in response, resulting in an outburst from the young man, who subsequently brandished a knife (there are conflicting reports regarding the type of knife) and cut the arm of an officer. There were five police officers on site, at least one of whom had a taser. However, they made the decision that the only way to subdue the young man was to shoot him.

My heart goes out to the family. What’s more, I am deeply concerned about how this boy was failed by the systems that should have been in place to support him. While his death was at the hands of a few police officers, as a nation we must bear the responsibility for our inability to adequately address the needs of autistic teens and adults who engage in aggressive behaviors.

Since June 2010, police had been called 12 times to help deal with Stephon’s behavior. In an incident in December—on the boy’s birthday—Stephon hit his mother in the face. He then fled from officers with a knife and was apprehended through the use of a stun gun. Stephon’s parents indicated in interviews that they were told by social service personnel that the only way to access psychiatric hospitalization for the young man was to call the police first. It is also worth noting that Stephon attended a school for children with autism.

I will leave it to others to discuss what the police officers should have done differently. Instead, I want to focus on the support needs that were clearly unmet in Stephon’s world. While it has been reported that Stephon had an Asperger’s syndrome diagnosis, it’s reasonable to question whether he had a co-morbid psychiatric condition as well. If this is indeed the case, was that condition being treated and monitored? Is it true that the only way Stephon could get mental health care was through police intervention? If so, this means that mental illness was being addressed via crisis management, not through ongoing care.

Then there’s the issue of training for people in Stephon’s “Circles of Support.” What kind of Behavioral Support Plan was in place at school, and did his family receive any guidance in implementing similar strategies at home?  It’s crucial that IEP planning for transition into the community focus on behavior as well as academics. It’s not easy to know what to do in the face of an outburst on the part of a 220-pound 15-year-old. It can take some real pros to de-escalate such a situation. Is it possible that family training in how to manage oppositional behavior might have helped?  If so, is there a network in place to provide parents with this education?

The police did have a bit of training in autism. The officers had participated in a three-hour workshop designed to help them respond to incidents involving people with ASD. It doesn’t sound like much, but it’s better than nothing. The problem is—as anyone who has parented or worked with folks with autism can attest to—there’s no rulebook here. Behavior management is individual-specific. Also, most workshops on autism don’t address what to do if the individual involved has uncontrolled psychiatric issues in the mix.

If Stephon’s altercation with police was an isolated incident, it would be terrible enough. But it’s not. Autistic adults have run-ins with the law on a regular basis. Fortunately, the majority of those incidents don’t result in fatalities. But what’s going to happen as increasing numbers of autistic adults enter their communities without adequate behavioral and mental health supports? Are we going to expect law enforcement personnel to step in? If so, we should expect an increase in events like Stephon’s shooting. The nature of police work is to respond to crises. People make different decisions in a reactive situation than they do in a proactive one. And it’s not reasonable to expect our police officers to become behavior management specialists.

The story of Stephon’s death provoked a number of responses on the Autism After 16 Facebook page. One parent posted, “This my worst nightmare, my son is also aggressive, the school called the police just today.”  We need to think long and hard as a community and as a country about how to keep this kind of nightmare from becoming increasingly all too real. We need state social service systems--agencies that are charged with providing medical and behavioral supports—to make good use of resources rather than tying dollars up in layers of bureaucracy. Otherwise we will find that we have simply exchanged one institutional system for another as an increasing number of adults with autism find themselves facing police.

I have a prediction for 2012—well, a hope, anyway. This will be the Year of the Aspie. The signs are out there. The New York Times last week published an article profiling a young couple with AS, Kirsten Lindsmith and Jack Robison, which got picked up by newspapers all over the country. Robison’s dad, John Elder Robison—who also has AS—is a bestselling author, and increasingly in demand as a speaker. A young British man with AS named Scott James is firing up the Internet with his singing. And our newest contributor, John Scott Holman, is poised on the brink of what will be an undoubtedly spectacular writing career. What’s more, characters with Asperger’s syndrome are turning up with greater frequency in popular culture, a sign of AS having crept into our national consciousness, even if the representations aren't always spot on.

Needless to say, I am thrilled. This is an important first step in our national dialogue about how to include adults with autism into our communities well. I’d love to see so much more of this during the coming year. As an increasing number of Aspie students attend college alongside neurotypical peers and with accurate diagnoses in hand, perhaps we’ll actually see the professors at those colleges learn how to work with them successfully. (Let’s think beyond extended time on tests, please … ) Fingers crossed that maybe this will be the year that we see the employment rate for people with Asperger’s increase, with more opportunities in both competitive employment and creative entrepreneurship available. Wouldn’t it be great to see adults with AS get really good support in managing co-morbid issues such as anxiety and depression that often get in the way of successful functioning? And maybe, just maybe, to have some of that national awareness translate into less bullying, teasing, and being shunted to the side as weird or annoying?

I choose to believe it can happen.

But here’s my worry. In a nation often more concerned with political correctness than political wisdom, we will think being “open-minded” about Asperger’s syndrome is enough. That we get to pat ourselves on the back because we love “The Curious Incident of the Dog in the Night-time.” That being a tad more forgiving of social awkwardness means we’ve got this adult autism thing wired.

It doesn’t and we don’t.

I really want 2012 to be the Year of the Aspie. Because maybe then 2013 will be the Year of the Autistic Adult. The year in which we, as a nation, do some real talking about how many adults on the autism spectrum there are in this country now without services. And about how many more there will be when the one in 110 children with ASD become grown-ups. About how vast our societal needs are to provide them with opportunities, and how our floundering economy will impact service provision. That most autistic adults will outlive their rapidly aging parents, parents who are running out of money themselves. That we will realize there are many adults with autism who cannot speak, but given access to alternative means of communication, have lots to say. That people with autism don’t stop learning at 18 or 21, and that we need to be smart, thoughtful, creative teachers. That everyone deserves access to meaningful activity, and support in reaching their fullest potential. And that if we can’t get on the stick and figure some of this out, down the road we will be staring at a huge population of completely disenfranchised autistic adults—adults without jobs, without healthcare, without homes.

So, I choose to crack a bottle of champagne and celebrate the upcoming Year of the Aspie. To toast the national commitment to adults with autism that this first step portends.

Ever hopeful.

As the population of people on the autism spectrum grows, the industry of autism service provision burgeons. This is both the good news and the bad news. Lack of opportunities and options—especially for adults with ASD—means that many families are desperate for support. An increase in attention to our population’s needs will undoubtedly mean that more people can be served and helped. But it can also mean that the industry expands quickly and without responsible standards of practice.

It is incumbent on families of adults with autism to engage in dialogue about best practice and to hold service providers accountable for meeting our population’s needs well and responsibly. We need service providers who understand the intricacies of working with adults with autism and who understand the complexities of interacting with their families. We must insist that companies that seek our dollars—either privately or as taxpayers—actually deliver the goods, not just lip service. These dollars are very dear, and must last.

Adults with autism and their families are vulnerable as consumers, precisely because there are so few services available. Marketing staffs know this. They know what to say to us to tempt us to sign on. The most enticing promise is that of potential employment. Acquisition of independent living skills is another big sell, as is the ability to self-advocate. We yearn not only for increased independence for our children, but normalization for our families. And so service providers fill their brochures and websites with glossy pictures of smiling adults at work, with friends, in the community. We imagine our adult children in those snapshots. 

Pretty pictures aren’t enough, however. There must be something behind the spin. We need to ask service providers to talk in terms of program methodology, efficacy, efficiency and outcome. In the article, “Researchers report Wanh, Wanh, Wanh, Wuh-Wahn, Waaahn” by Sophia Colamarino, we focused on how to evaluate science reports regarding autism. The same principles outlined there can be applied when it comes to service provision. It is not unreasonable to expect service providers to know and report on their rate of success in what they do. And it is not unreasonable to expect these companies to gather and report this information responsibly. If a provider purports to develop employability, for example, consumers need to ask how many of the clients who’ve passed through the program have obtained and maintained jobs. Be wary of the “data” which provides statistics without information on how the study was conducted. In other words, let’s say 100 adults with autism have exited a program. It is not meaningful to contact 10 of them—especially if they are not randomly chosen—find five people who have held some type of job and report that “50% of former clients surveyed are employed” without also describing the sample size and how the participants were chosen. If examining the acquisition of independent living skills, it is important to understand how these skills were measured at intake, and how they are being measured now. Parents sometimes assume that an adult with ASD has limited skills because they’ve never pushed for demonstration of those skills. If skill assessment is based on parent report, the “baseline” of existing skills can be inaccurate and the success of the service provider can be exaggerated.

As a community, we need to be focusing on the development of affordable services of quality. We need to feel sufficiently empowered as consumers to ask for real, meaningful outcome data. When the Individuals with Disabilities Education Act (IDEA) was created and reauthorized, it was mandated that IEPs contain goals that are measurable. We should expect adult services to measure progress as well. Yes, it’s difficult. Yes, if a provider has only been around for a few years, data will be limited. But a service provider worth its salt will quickly turn its attention to self-evaluation. Not only to provide consumers with accurate information, but to ensure that its model is functioning as intended.

At AA16 we view it as central to our mission to search out, analyze, and report on innovative, responsible service providers. We’re interested in specific companies, but we’re more interested in models of service delivery that work. We want to understand how the stand-out companies do what they do and how families across the country can access or replicate those models. We need many more services for adults with autism. But we can’t afford for these services to be ineffective or wasteful. As individual families, and as a country, we must insist that this infant industry grow up strong.

As the population of people on the autism spectrum grows, the industry of autism service provision burgeons. This is both the good news and the bad news. Lack of opportunities and options—especially for adults with ASD—means that many families are desperate for support. An increase in attention to our population’s needs will undoubtedly mean that more people can be served and helped. But it can also mean that the industry expands quickly and without responsible standards of practice.

It is incumbent on families of adults with autism to engage in dialogue about best practice and to hold service providers accountable for meeting our population’s needs well and responsibly. We need service providers who understand the intricacies of working with adults with autism and who understand the complexities of interacting with their families. We must insist that companies that seek our dollars—either privately or as taxpayers—actually deliver the goods, not just lip service. These dollars are very dear, and must last.

Adults with autism and their families are vulnerable as consumers, precisely because there are so few services available. Marketing staffs know this. They know what to say to us to tempt us to sign on. The most enticing promise is that of potential employment. Acquisition of independent living skills is another big sell, as is the ability to self-advocate. We yearn not only for increased independence for our children, but normalization for our families. And so service providers fill their brochures and websites with glossy pictures of smiling adults at work, with friends, in the community. We imagine our adult children in those snapshots. 

Pretty pictures aren’t enough, however. There must be something behind the spin. We need to ask service providers to talk in terms of program methodology, efficacy, efficiency and outcome. In the article, “Researchers report Wanh, Wanh, Wanh, Wuh-Wahn, Waaahn” by Sophia Colamarino, we focused on how to evaluate science reports regarding autism. The same principles outlined there can be applied when it comes to service provision. It is not unreasonable to expect service providers to know and report on their rate of success in what they do. And it is not unreasonable to expect these companies to gather and report this information responsibly. If a provider purports to develop employability, for example, consumers need to ask how many of the clients who’ve passed through the program have obtained and maintained jobs. Be wary of the “data” which provides statistics without information on how the study was conducted. In other words, let’s say 100 adults with autism have exited a program. It is not meaningful to contact 10 of them—especially if they are not randomly chosen—find five people who have held some type of job and report that “50% of former clients surveyed are employed” without also describing the sample size and how the participants were chosen. If examining the acquisition of independent living skills, it is important to understand how these skills were measured at intake, and how they are being measured now. Parents sometimes assume that an adult with ASD has limited skills because they’ve never pushed for demonstrations of those skills. If skill assessment is based on parent report, the “baseline” of existing skills can be inaccurate and the success of the service provider can be exaggerated.

As a community, we need to be focusing on the development of affordable services of quality. We need to feel sufficiently empowered as consumers to ask for real, meaningful outcome data. When the Individuals with Disabilities Education Act (IDEA) was created and reauthorized, it was mandated that IEPs contain goals that are measurable. We should expect adult services to measure progress as well. Yes, it’s difficult. Yes, if a provider has only been around for a few years, data will be limited. But a service provider worth its salt will quickly turn its attention to self-evaluation. Not only to provide consumers with accurate information, but to ensure that its model is functioning as intended.

At AA16 we view it as central to our mission to search out, analyze, and report on innovative, responsible service providers. We’re interested in specific companies, but we’re more interested in models of service delivery that work. We want to understand how the stand-out companies do what they do and how families across the country can access or replicate those models. We need many more services for adults with autism. But we can’t afford for these services to be ineffective or wasteful. As individual families, and as a country, we must insist that this infant industry grow up strong.

My husband and I have very recently become empty nesters. Both of our sons have moved out. But we’ve barely had time to do a happy dance before friends announce, “Oh, they’ll be back. Finding a job right out of college is so hard, they’ll move home.”

Gulp. I look around and our friends seem to be right. With increasing frequency, college grads are moving home for financial reasons. Last May, the John J. Heldrich Center for Workforce Development at Rutgers University released a study entitled, “Unfulfilled Expectations: Recent College Graduates Struggle in Troubled Economy.” The study reports that of the 571 students surveyed, only 53% held full-time jobs. And these are neurotypical young adults, with four-year degrees.

What the survey also indicates is that many of these grads are underemployed. That is, they’re waiting tables, stocking shelves, and ringing cash registers. Those that did land a job in their chosen field saw median salaries drop by several thousand dollars from just a few years ago.

So the question becomes: If this is what neurotypical college grads are experiencing, what does this say about employability of young adults on the autism spectrum? Why would an employer want to hire someone with autism when he’s got a stack of resumes from neurotypical college grads on his desk and only one job to fill?

As a community, we can provide that employer with some answers. We know that each individual with autism has her own skills and talents to share, just like anyone else. Some folks with autism even have highly developed skills, thanks to the specifics of how their brains function. But we also need to address the very real issues that keep adults on the spectrum from finding and maintaining work. Some adults with autism will find success in competitive employment, but we need to provide them with real-world training to do so.  Others will never manage a competitive employment situation. Jobs will need to be created that are specifically suited to their talents and help them manage their challenges.

With one in 110 children diagnosed on the autism spectrum, we are a large community of families and friends. We are also a large community of consumers. We need to start harnessing our power as consumers to encourage employers to develop opportunities for adults with autism. We need to shop at stores that hire adults with autism, even if it means a longer drive or a few pennies more in price. Walgreens, for example, has been at the forefront of hiring adults with autism. We need to applaud these employers in our hometowns, and in our Chambers of Commerce. We need to get the word out when we find a business that makes an effort to develop a working model of employment for adults with ASD. Government incentives to hire people with disabilities exist, but are limited. We need to help create community and revenue incentives.

Some adults with autism will find that even customized jobs can’t be managed. Health issues (including mental health), transportation issues, or sensory issues may be too overwhelming. So we need to get creative about entrepreneurship opportunities. The good news is that we live in an age in which it is possible to work from home and reach people across the globe. As communities, we need to think about how to develop opportunities specifically designed to help adults with autism make use of and maximizes their talents, without dwelling on their challenges.

If you know of an employer, big or small, that has demonstrated a commitment to hiring and working with adults with autism, give them a shout-out on our Facebook page. Then let’s drive consumer dollars to the doorsteps of those companies willing to help adults on the spectrum feather their own nests.

Welcome to Autism After 16. We hope you find this website useful. It's our mission at AA16 to try to provide you with information and analysis on adult autism issues. This website arose out of the desire to help adults with ASD and their families make sense of the morass of information and misinformation out there.  

We are not here to tell you what to do, who to hire, or what to buy. We are here to try to help provide some tools for you to make thoughtful decisions about trajectory for adults on the autism spectrum. It's our hope that we can do some of the research, analysis, and synthesis of information for you. Then we'll report back in an accessible manner.  

Most of the contributors to this site have personal connections to autism. Those that don't are here because they understand how much we need communities to get involved with our population's issues.  

Guest essayists who are also service providers have contributed to AA16 at our invitation. We've asked these contributors to write on topics specific to their expertise. While we provide links to their websites, it's still up to you to evaluate whether their services match your family's needs.  

We've also included a section, called Life Skills, that contains a variety of previewed videos and step-by-step instructions on components of independent living. Some of these "How-Tos" are simple, others are fairly complex. We will touch on everything from household chores to dating. We hope you will refer to these yourself, or utilize them with your adult child or student to help teach and generalize skills. Please note that some videos may contain skills which require support or training.  You must determine which are appropriate for you, your adult child, or your student to use safely.  Also note that because these videos have been embedded from other websites, they may contain pop-up ads.

AA16 is a work in progress. We will add and update information frequently, so please visit us often. As information changes and new services, programs, and agencies are developed, we will add more links to existing articles.  

There's a saying that the experience of living with autism is a marathon, not a sprint. Take this to heart. You will hear us urge you, time and again, to think about lifespan, not the short term. There are no easy answers here. But there is dialogue to help you make the most of all your resources: Time, talent, money, and community.

AA16 isn't about us, it's about you. Even when one of us is sharing a personal story, its purpose is to engage with you. So engage with us. Let us know what you think, what you are experiencing, what you want us to cover. Ask us questions, point us to information, and participate in our surveys so that we can help our larger communities understand our experiences.  

On behalf of everyone at AA16I thank you for joining us. It's good to have company when running that marathon.