unemployment

What Can We Do to Address Unemployment in the Autistic Community

Over the next decade, an estimated 500,000 teenagers with autism will enter adulthood, and potentially, the workforce. Many of these young adults will begin the job hunt, hoping to find work that can help them establish independence and gain more independence and personal fulfillment. But, unemployment remains a significant problem. 

Unfortunately, as things stand now, more than half of young adults with autism are unemployed or unenrolled in higher education. Of autistic adults who graduated from college, 85% are unemployed. Comparatively, the national unemployment rate is 3.7%.

Furthermore, though nearly 18,000 individuals with autism use state-funded vocational rehabilitation (VR) programs, in 2014 only 60% left the program with a job. Of that group, 80% worked only part-time for a median weekly rate of $160.00.

Clearly, there is room for improvement. So, what needs done? 

For Employers:

There are many great companies that have inclusive programs supporting a neurodiverse workforce, like SAP, Hewlett Packard, Microsoft, Ford, and Ernest & Young. Other companies actively recruit individuals who are on the autism spectrum, recognizing the unique talents and skillsets they can bring to the table. Right now, there are over 50 companies that rely on the work of employees who are on the spectrum. I wrote about one of these companies, Rising Tide Car Wash, in a previous blog post about supporting neurodiversity in the workplace.

These companies are setting a great example, but they are still the exception when it comes to inclusion for autistic individuals. 

Here are a few areas of focus that can move these hiring and retention practices for autistic individuals from exception to the norm:

  • Recontextualize your interview process. For many individuals with autism, the interpersonal experience of an interview can be difficult. A traditional interview process, involving direct conversation, maintaining eye contact and reading social cues will be more challenging for most individuals on the spectrum. Therefore, many of these unspoken qualifiers like maintaining eye contact should be considered differently when weighing the fit for the job. In addition, it may be more difficult for autistic individuals to easily and clearly articulate what they know and what they can do for the company. Instead, give them an opportunity to show you what they are capable of and be patient. As the employer, approaching these interviews creatively, with an understanding of the individual is one of the most inclusive things you can do. 
  • Beware of sensory overload. Loud, open office spaces might not be the ideal working environment for autistic individuals who experience sensory overload. When bringing on a new team member, make sure you’ve already discussed this potential issue. If it’s a problem for that individual, be ready with solutions. Designate a quiet place in the office where that person can go to work in peace or provide noise-canceling headphones. Provide accommodations such as noise-canceling headphones or adjustment in the lighting to ease overstimulation.  And communicate with other team members exactly what’s going on and why so that there is no resentment or misunderstanding.
  • Focus on retention. It may be easy for leadership and team members to misinterpret certain behavioral traits of an autistic individual. It’s important that these misunderstandings don’t result in termination, as often times the person will mean no offense by their words or actions. Being aware of what’s really going on, and then communicating deliberately to course-correct and hopefully prevent later incidents should be the first consideration for employers who are serious about autistic inclusivity.

There are certainly a host of other issues to consider when implementing a more neurodiverse plan at work, and if you have further questions, an expert consultant could provide more insight. 

In the Autism Services Industry:

The autism services industry does a lot of good work helping children learn important skills. But an area for advancement is giving teenagers the skills they need to be successful in jobs.

Here are a few places to start:

  • Identifying strengths and job matching. Essentially it comes down to the fact that employees are more likely to have success in their job if their skill set lines up with the requirements. Finding that fit starts with identifying the individual’s strengths and passions, and what skills make them standout candidates. For example, some individuals with autism thrive when executing tasks that require repetition and routines, making them strong candidates for assembly line, data entry, or other computer work. The range of skills autistic individuals can possess is as varied as the individuals themselves. Providers should be sure to involve them in the process of career pathing and job matching. The better we get at identifying talents and skills and matching them with an appropriate position, the closer we’ll be to solving the problem of workplace inclusivity. 
  • Expanding coverage and access to services based on region. Services often vary across state boundaries. For example, Alabama saw 79% of individuals with autism find a job after vocational rehabilitation (VR), compared to 29% in New Mexico. Addressing these gaps and working together to create uniform VR protocols will help increase the number of autistic individuals placed in jobs that are strong fits for their skill sets. With the help of activist providers and investors, this change could be within reach and hugely impactful.

Finding, securing, and holding a job can bring a new sense of independence and fulfillment to the lives of autistic adults. If employers engage with inclusivity in good faith and providers are able to prepare autistic individuals with the skills they need to succeed, solving the problem for underserved autistic adults could be closer than we think, even if we still have a long way to go. 

 

Looking for more ideas? Check out my book, Autism Matters.

sensory

How to Overcome Sensory Issues While at The Dentist – by Dr. Greg Grillo

After 17 years of practice in North Central, Washington, nobody’s more familiar with dental anxiety than I am. For dental patients who have autism, especially children, this anxiety is compounded by challenging sensory elements such as bright lights and loud noises.

Dental care is an extremely important part of living a healthy life and living with autism shouldn’t prevent you or your child from getting the care they need. Fortunately, many dentists—including myself—are sympathetic to the needs of those who experience sensory overload. Here are a few things you can do to help overcome sensory issues while at the dentist:

Talk to your dentist

Before you schedule your first appointment, you should speak with the dental professional in question and ask them what accommodations they make for patients with sensory issues. If the answer is “none”, it’s time to find a new dentist.

However, most dental practitioners will be “on your side” and will want to make an autistic patient’s visit as comfortable as possible. Here are a few things a dentist might do to help avoid sensory overload:

  • Schedule a desensitization appointment (see next section)
  • Schedule the main appointment at a time that is less busy
  • Use the patient’s favorite toothpaste flavor—a taste sensation that they’re already comfortable with
  • Provide the patient with a soft blanket to use during the appointment
  • Provide the patient with sunglasses which can help with the bright lights
  • Provide the patient with headphones that will play soothing music or sounds during the appointment

If there is something specific which you know your autistic child needs to feel comfortable, tell your dentist about it and they should do whatever they can to accommodate that need.

Schedule the Desensitization Appointment

Desensitization appointments (sometimes known as “familiarization appointments”) are becoming a standard procedure in the growing field of special care dentistry and are one of the best things a dentist can do to make a patient with autism more comfortable. Despite the scary name, the idea is quite simple: a desensitization appointment is an appointment scheduled before the actual procedure in order to show the patient the operating theater and explain the function of every piece of equipment in the room. This is a great opportunity for your child to meet staff members and become familiar with the dentist office before any work is done on their teeth.

Practice at Home

If you have a child with autism, sensory calming strategies at home can be one of the most useful ways to make sure they’re comfortable with going to the dentist. You can do your own version of the “desensitization appointment” by showing your child pictures or videos of a dentist’s office, or by reading them storybooks about dental appointments. This can help your child become more familiar with the practitioner’s office and what goes on there before their actual appointment, which can help them feel more at ease and less likely to experience unpleasant sensory overload.

Some parents I’ve spoken to have also found that turning the dental visit into a role-playing game helps their child become more familiar with the unfamiliar concept. In this fun and interactive form of practice, you can play the dentist while your child takes on their actual role of the patient while you act out some of the basic steps of a dental appointment. This is a particularly good way to work through some of the physical aspects of their visit: have your child lie flat with their hands on their stomach and practice opening their mouth as wide as they can.

I understand that the dentist’s office can be an overwhelming and frightening place, but regular checkups are essential for any person’s physical health and happiness. As long as you find a dentist who is dedicated to making the visit as comfortable as possible—and I’m happy to say that I truly believe that’s the vast majority of practitioners—the appointment can become a great learning experience for both you and your child. I hope these tips will help you overcome any sensory issues you may experience so that all involved can have a positive experience the next time you visit the office.

 

Visit dentably.com to get in touch with Dr. Grillo.

autistic

Areas of Advancement in Autism Services for Successful Adults

As autism prevalence increases and more children on the spectrum mature to adulthood, the need for services that help autistic adults lead independent and fulfilling lives is becoming an increasingly urgent concern. While many interventions help autistic kids and their families navigate the challenges of childhood and adolescence, there has been comparatively little progress made as it concerns long-term, sustainable outcomes for these individuals. As we continue to gain a deeper understanding of autism, it’s becoming an unavoidable reality that current treatment programs are not equipping kids with the critical skills they need to flourish in adulthood.

This leaves autistic adults and their families at a loss for how to plan the future. Compounding the issue, federal regulations aimed at promoting inclusion in communities for adults with disabilities have created restrictions around where individuals can live and with whom they can live, often making this process much more challenging than it needs to be.

While early intervention has improved and should continue to do so, it’s time that we, as an industry, consider how treatment should evolve to serve autistic individuals beyond high school graduation. I believe this issue is an emergent characteristic of a neurotypical outlook that presupposes the solutions needed are somehow fundamentally different for autistic and neurodiverse individuals. The reality is that as we grow into adulthood, we all—with very few exceptions—want the same things out of life: independence, security, self-determination, meaningful relationships, and dignified employment. 

So, how do we orient autism services to create these outcomes for autistic adults?

Emphasize higher education:

It’s true that education after high school might not be a fit or priority everyone, but for many individuals with autism, it is assumed that college is not an option. The opposite is true. With effective preparation and the right support system, autistic individuals can not only attend college but also find success. But, this preparation cannot be an afterthought of intervention. 

Think of your own experience in preparing for college. There were probably colleges you imagined attending while in middle school. By freshman year of high school, many of us were already planning class schedules and extracurriculars to make our transcripts more appealing to Deans of Admissions across the country. College visits were planned by the end of sophomore year. SAT prep by junior year. All capped off by the final application process. There is no reason autistic individuals with college aspirations shouldn’t follow a similar preparatory path. It’s on service providers to start early in mapping a path to college that is specific to the needs of the individual they are serving. 

First, it’s important for students and their families to recognize how high schools and colleges differ in their support for individuals on the spectrum. In high school, educators are generally more empowered to adopt changes and to deliver an individualized curriculum to help individual students learn and succeed. However, in college, the rules change.

Every U.S. college and university that accepts federal funding is required to provide “reasonable” support for students with disabilities. It’s the interpretation of the word “reasonable” that muddies the institutional support picture on college campuses. The support autistic individuals have access to in college will vary by institution, complicating the decision-making process. It’s important that families and providers know how to determine which schools will provide the support system the individual needs. A simple call to the college’s disabilities services department is a good start. Ideally, providers with an eye on the future like this would have this resource readily available. Unfortunately, we are not there yet.

Additionally, when a student goes off to college, self-advocacy becomes increasingly important. With a new degree of independence, students will be tasked with asking for the support they need. It’s something that many neurotypical individuals take for granted. We’re often vocal about our needs and have little trouble articulating what those needs are. The same isn’t always true for autistic individuals. 

There is sometimes a hesitancy to disclose a disability for fear of repercussions socially or from professors. Disclosure is a behavior that can be practiced and conditioned by service providers long before high school graduation is on the horizon. A student who arrives well prepared with a list of conditions that help him or her perform better (such as not switching lab partners on a weekly basis or the need to get up and walk out of the classroom to take a break) will be better positioned for a successful experience. 

There are many different programs and opportunities for young adults on the spectrum who are looking to keep learning. But like for all students, considering college, finding the right institutional fit, and preparing for a self-directed future needs to become accordingly and fully integrated into intervention. 

Employment

One essential aspect of leading an independent and fulfilling life is gainful employment. We’ve made progress on the hireability of autistic individuals and the contributions they are able to make in the workplace. Many major companies like Microsoft, Ford, and Ernst & Young have recognized the unique and impactful skills autistic individuals can add to their business. 

The unfortunate thing is, these kinds of opportunities are few and far between for many autistic adults. The prevailing (and harmful) perception among the public regarding autistic individuals in the world of work is rooted in the savant trope perpetuated by popular media—think the show The Good Doctor, starring Freddie Highmore as the autistic and brilliant surgical resident Sean Murphy. 

This is not to say those people don’t exist or that they themselves are stifling real progress, but the idea that only the most extreme outliers on the spectrum are employable only applies to autistic individuals. “Genius” is rarely—if ever—a qualifier for neurotypical individuals seeking gainful employment. And it’s this disparity in perception that underlines the yawning gap in unemployment levels among autistic individuals relative to the national average. The national unemployment rate sits around 4.5% on a rolling basis. That rate skyrockets north of 80% for adults with autism. 

The work that needs to be done to shift this perception is a far more broad and complicated discussion. Yet, we can exclude this harmful trope from intervention programs by doing more than just managing behaviors. Caregivers should treat every autistic individual as though gainful employment will be a part of their future. Those jobs can range from programming wizard with Microsoft to more modest, everyday jobs that still need to be done. There is dignity in work. Full stop. 

That said, much like college considerations, it’s important to identify, control, and amplify the skills the individual possesses before charting a course to the future. Does the child like patterns and routines? Are they particularly good with computers? Do they have a knack for organization? Perhaps they are artistically inclined. If caregivers, providers, and even the children themselves can identify these preferences and passions early on, they can work to identify potential career paths and hone the requisite skills. Starting these conversations in middle school, long before the job hunt, and practicing with volunteer jobs and mentoring can lead to much better results!

Pairing a person with a job based on skill set and preference will lead to more long-term fulfillment and better retention. This is an area where we, as an industry, can improve. Additionally, raising more awareness in companies to promote neurodiversity is also important. We’re seeing progress, but we need more businesses than giant corporations who can afford to take the “risk” on neurodiversity to get involved in the solution. Small- to medium-sized businesses need to embrace neurodiversity. For our part, we can get a headstart on preparing autistic individuals with the necessary tools to be appealing candidates for any career they are able to pursue. 

Independent Living

Independent living can start when a young adult goes to college and made more vital when one starts to work. But, no one inherently possesses the skills to succeed on their own. For neurotypical individuals, these routines, habits, skills, abilities, and coping mechanisms are accrued through a lifetime of teaching and preparation. 

Some of the foundational behaviors like hygiene, communication, and self-care are already core curricula of treatment. A friend of mine, Mari-Anne Kehler, talks about “citizenship”—teaching our kids from a young age to do for themselves, to participate in family routines, and to contribute to our society. Reinforcing this concept of citizenship is a critical next step for truly independent living. All parents have a tendency to do things for their child because it’s often quicker and easier in the context of a busy, complicated life. But, in the long run, dedicating the time and patience to help the child become as independent as possible at a young age will create a better long-term, self-directed future.

The other key component of independent living is access to housing, which is often a tragic challenge for autistic adults. Research at Drexel University in Philadelphia has found that nearly half of all adults on the autism spectrum live at home, and only 10% live independently. It does not need to and should not be this way. Depending on the needs of adults on the spectrum, there are homes and communities where autistic individuals can live while getting the support they need to thrive, like First Place in Phoenix

Still, while more and more supportive housing communities are popping up across the country, housing remains an area that needs significant investment and improvement. Parents should not be solely responsible for creating and developing these housing options for their children. It’s to the benefit of society at large that all of us assist in creating inclusive communities that can provide support and independence for autistic adults.

Investor Involvement

The autism services industry is growing. As needed advancements are being made to help individuals prepare for higher education and employment, the industry needs savvy, smart, and socially conscious investors to get involved. Not only can you make positive financial returns, but you can also make a positive difference in the lives of adults with autism and their families. 

Want to learn more? Check out my book, Autism Matters, and learn how you can get involved.

Supporting Neurodiversity in the Classroom

One concept frequently lost in the education of autistic children is that the purpose of education is to prepare them, not only for managing childhood but for succeeding in adulthood as well. Autistic adults are seeking the same markers for happiness as neurotypical adults. They are looking for as much independence as possible—a job to support themselves, a strong social network, the pursuit of their passions and fulfilling relationships.

The current services provided by the autism industry are ill-equipped to provide autistic individuals with the skill sets they need to live and thrive independently. While our science provides for the tools to make this happen, there are too few providers focusing on what needs to be learned in adolescence to prepare young autistic adults for employment and independent living. Too few providers are truly engaged in measuring the long-term outcomes and quality of life indicators of the services they are providing to the child and their family. They fail to view their young clients as the adults they will become. Autistic adults and their families have a myriad of frustrating and distressing tales about the mismatch between their early education and the tools they need to function as adults.

Most younger autistic adults today were educated under the law now known as IDEA, the Individuals with Disabilities Education Act, which mandates that physically and mentally disabled children be educated in the “least restrictive environment.” This led to the mainstreaming of many autistic students. The goal of this law is to provide disabled students with the same opportunities to participate and succeed in life as neurotypical students.

Teaching autistic children in a class of neurotypical students requires a new kind of thinking on the part of teachers and administrators. However, not all teachers and school districts are prepared or equipped to manage the variety of student needs, which can be overwhelming. This is one area in autism services that could use significant improvement.

When we think about educating students with autism and their unique needs, it’s crucial that we remember these students should not be viewed as “broken,” needing to be “fixed” or normalized. This is an old viewpoint that drove much of the research and intervention in the early years of treating this disorder. Instead, our educational system needs to equip them with the skills and tools they will need to navigate the next 60-70 years after they leave high school. Most of the autistic adults with whom I have spoken want to be viewed as themselves, as diverse individuals who perceive the world differently, adding to the diversity of our population with a unique matrix of strengths and stretches.

The “neurodiversity” approach to classroom education recognizes and respects the mosaic of neurological differences as part of human variation, like eye color and personality. It focuses on aiding autistic individuals to interact successfully with their environments, and learn how to communicate with and navigate a world designed around the neurotypical majority.

Dr. Thomas Armstrong, executive director of the American Institute for Learning and Human Development, and author of books about neurodiversity, advocates for embracing the strengths of a neurodiverse student ecosystem by incorporating new approaches into school curricula. Some of his ideas include:

  • Computer programs and applications that allow students with special needs to overcome obstacles.
  • Networks of experts with whom educators can consult to support the social and emotional lives of neurodiverse students.
  • Innovative learning strategies that are tailored to each student’s unique strengths.
  • Guidance towards future career paths for which a student’s particular passions and preferences might be a good fit.
  • Modifications in the school environment that allow for seamless inclusion of neurodiverse students in the regular classroom.

 

Dominican University of California offers a course called “The Gifts of Autism” to educate teachers on how to take an asset-based approach towards educating students with autism. The class encourages teachers to consider how the strengths and weaknesses of autistic students in their classrooms are supported. Assignments require the study of methodologies and strategies to improve that support and explain how they will be deployed.

Classroom neurodiversity advocates point out that there is nothing particularly novel about the idea of employing multiple teaching methods within a single class. Even in classrooms comprising only neurotypical students, educators must accommodate a variety of learning styles like auditory, visual, tactile, and so on.

“Just as we celebrate diversity in nature and cultures, so too do we need to honor the diversity of brains among our students who learn, think, and behave differently,” says Dr. Armstrong.

 

light it up blue

Light It Up Blue for Boys, But Don’t Forget the Girls

Why do we Light It Up Blue? For years, prevalence data in the field of autism held that the condition primarily affects boys, by ratios described as four or five to one generally and up to 10-1 among those without intellectual handicaps.

Indeed, in the early days of identifying autism and Asperger’s Syndrome,  autism was described as “an extreme form of maleness.” Active British psychologist Simon Baron-Cohen theorizes that autism may be caused in part by exposure to high levels of testosterone in the womb. Although no one has definitively identified autism’s roots, there has been a general consensus that boys require a smaller amount of exposure to whatever the cause than girls do to inspire a diagnosis.

Symptoms are more subtle in girls

The result is that in the world of autism, girls often get lost in the shuffle. Diagnostic criteria for autism are disproportionately based on characteristics in boys, potentially revealing a point of bias between diagnosing the two sexes. Not surprisingly, it takes longer to diagnose girls, even compared to boys with the same severity of autism.

Autism symptoms may be subtler in girls than in boys, and girls may be more adept at masking them than boys. Research suggests that girls are able to study people and their behavior, and learn social rules through observation more easily than boys, thereby camouflaging their autism because they mimic socially acceptable interactions.

Researcher Somer Bishop of UCSF describes an encounter with a seemingly well-socialized girl who shook her hand, complimented her outfit and answered her questions. It wasn’t until a second encounter when the conversation was repeated nearly word-for-word, that Dr. Bishop realized the girl had simply practiced a set of neurotypical responses. The result may be that many autistic girls fly under the clinical radar.

Viewing autism through a male prism

Indeed, a 2014 study found “higher functioning” autistic girls tend to have fewer social impairments than boys do—just as neurotypical girls tend to be better socialized than neurotypical boys. Indeed, neurological testing has found that the brains of females with autism tend to look like those of typically developing males of the same age, with reduced activity in regions of the brain normally associated with socialization.

It’s clear now why we Light It Up Blue, and regardless of the complicated history of autism diagnoses, the tradition is worthwhile. However, viewing autism through a male prism has complicated the diagnostic process for girls and resulted in misdiagnosis and underdiagnosis. By definition, no one knows the exact scope of the issue, but it does call into question the long-held wisdom that autistic boys outnumber girls by four or five to one. The reality is that the ratio is likely much closer to 2:1 or an even 1:1, but because girls are often diagnosed with eating disorders or anxiety disorders when the root cause is actually autism, we see diagnostic numbers skew towards boys.

Why is this significant? Among the challenges facing individuals with autism is naivete about people being dishonest with them and difficulty recognizing social cues, often leading women with autism into abusive and dangerous situations. Almost every autistic woman I have interviewed has shared a story of finding herself in a compromised position, often with a traumatic outcome. Misdiagnosing girls with autism means we fail to teach them the social skills they need to navigate the world.

Some in the autism community suggest that clinicians apply sex-specific norms when diagnosing autism, to better define what autism looks like in girls. While we certainly should Light It Up Blue this month, it is pretty clear that much more distaff-focused research needs to be done, and clinicians need to be on the alert for subtle signs of the condition in girls.

Further reading on issues shaping autism services can be found in my book, Autism Matters: Empowering Investors, Providers, and the Autism Community to Advance Autism Services

intelligence

Measure What Matters: Redefining Neurotypical Intelligence Standards for Autistic Individuals

I’ve written previously about how we misunderstand the intelligence of people on the autism spectrum. We evaluate their intelligence with tests and observations that measure a narrow slice of the intelligence continuum and then judge them by their ability to socialize with us.

Neurotypical vs. Autistic Culture
Neurotypical people—a term for individuals without autism coined by people with autism—living in a neurotypical world, consider our present culture and socialization methods to be “correct,” and never pause to think how woefully we socialize with autistic people based on those standards. For example, we may become flustered while conversing with an autistic person when they fail to make eye contact with us. They might just as easily perceive us as poorly socialized when we insist on staring at them during a conversation.

Neither group is wrong; we’re just different. In order to better help autistic people navigate the neurotypical world, perhaps we ought to re-shape parts of that world to conform to their differences. This is precisely what we’re doing when we build ramps for people in wheelchairs or post signs in other languages for foreign visitors.

I’ve spoken about this at length with Dr. Sue Fletcher-Watson, a Chancellor’s Fellow at the University of Edinburgh’s Centre for Clinical Brain Sciences. She has done significant research on intelligence and socialization of individuals on the autism spectrum. Her conclusions reverberate with me and my experiences in the field.

Some Simple Adjustments
An autistic friend visited Dr. Fletcher-Watson for dinner and asked in advance what time she should leave. She knew that she would not be able to read the subtle cues neurotypical people understand as indicating it is time to go. Armed in advance with a time to leave, her departure avoided the awkwardness that might otherwise have ensued.

Dr. Fletcher-Watson has proposed involving autistic people in designing environments for others like them. She is also developing peer support models that match newly-diagnosed autistic adults with those who have learned how to accommodate their autism to the neurotypical world and pairing parents of autistic children with autistic adults.

Dr. Fletcher-Watson described for me how that might work: “Just imagine having an autistic guy come ’round and look in your house and say, ‘The hum from your fridge is very loud for me, so maybe you can find a way to make that quieter.’ Or, ‘These lights are very harsh.’ Or, you know, ‘This fabric feels uncomfortable.’ Articulating all of those things that maybe a child would not be able to articulate.”

Let’s Measure What Matters
Greater dedication to the real-world needs of autistic people might lead us to a different set of metrics. Maybe reading and writing aren’t nearly as important for some autistic people’s ability to function in the world as other skills and areas of learning. For example, a young man I know runs a food delivery business. He takes orders from various companies, reliably gets the orders right and makes correct change, and generally possesses the skills necessary to complete the job.

As a boy, he was removed from public school because of his behavioral issues. When his parents brought him home, they eliminated many of the sensory inputs in his home environment and were able to foster his learning and independence through different therapeutic approaches. Now, with a little support and mentoring, he has a job, a girlfriend, a roommate, and a self-determined life. Maybe he can’t check all the right the boxes on an assessment test of skills that measure standard conceptions of intelligence, but he is functioning well in the neurotypical world.

A more strategic approach to analyzing how we measure success for individuals with autism is indicated, to replace the rudimentary box-checking now in place. It must take into account real-world skills that accrue to the long-term benefit of those affected. Accomplishing this would be one small but significant step forward in their care and education.

 

You can find further reading on this and other subjects in autism services in my book, Autism Matters.

autistic individuals

The Social Intelligence of Autistic Individuals, Part 1

If a perfectly intelligent American were to find themselves catapulted into a foreign world with its own traditions, customs, culture and language, all totally unfamiliar to the person transported there, it would not be surprising for the people of this world to consider their visitor unintelligent, viewing intellect through the narrow lens of their own experiences.

Not only would our American visitor be unable to communicate verbally, but he or she also would not be particularly adept socially, unfamiliar as they would be with the cultural norms of this utterly alien place.

There is a certain analogy here with individuals along the autism spectrum. In my recent interview with Dr. Sue Fletcher-Watson, a developmental psychologist at the University of Edinburgh, she noted we often evaluate intelligence via a test that measures only very specific functions that don’t play to the strengths of those on the spectrum. But how would we view people with autism differently if we employed autistic-centric criteria?

Fletcher-Watson and her team of researchers conducted experiments using a familiar tool – the game of telephone, where a story is passed orally from one person to another down a chain of people until it hardly resembles the original story. This is called a diffusion chain and the rate of degradation in the story is fairly predictable.

The researchers conducted this experiment with a group of neurotypical subjects and with a group of autistic subjects and the rate of message degradation was the same for the two groups. But something very different occurred when the neurotypical and autistic individuals were mixed. The story degraded at a much faster rate.

For autistic individuals, “the issue is not that they don’t have social skills. It’s more that there’s a mismatch between their style of sociality, and the style of the kind of neurotypical majority,” Fletcher-Watson told me.

Another issue that those with autism face is the inadequacy of average. A neurotypical person with average intelligence is simply viewed as average, just an ordinary person with friends and loved ones, weaknesses and strengths.

Because people with autism are often stigmatized as anti-social savants, those lacking the savant element are simply stigmatized as anti-social, when in fact, they have much more in common with ordinary people of average intelligence.

In fact, high-functioning, highly-verbal autistic individuals are in some ways the most debilitated. Autistic individuals who can navigate the intellectual world but come unglued in overwhelming sensory environments might score high on an IQ test but would have difficulty navigating life without support. Indeed, highly verbal adults with autism have a suicide rate eight times the average for neuro-typical adults.

When we take an asset-based approach and focus on the strengths of autistic people and their ability to function on their terms, we give them a much greater opportunity to succeed.

“I know a man who doesn’t speak. He’s in his 30s. He doesn’t read or write, but he owns his own sandwich-making business,” Fletcher-Watson told me. “Everyone buys those sandwiches from him for lunch, and he makes a good living, and obviously he has someone to help him with the paperwork.”

“But, you know… he passes his hygiene inspections because he’s very good at following rules.”

 

You can read further on this topic and more in my book, Autism MattersAnd make sure to connect with Dr. Sue Fletcher-Watson for more of her expert insights and updates on her work!

 

ABA

Looking Ahead to Next Evolution of ABA

Most professionals and families in the autism community would agree that over the past 30 years, ABA has served autistic individuals well, providing many of the skills and supports necessary to improve functioning and enable individuals to participate more fully at school and within family systems. So inevitably, it is time to evolve.

All companies and industries evolve or wither. Forces of change—internal and external—demand new approaches, innovative solutions, or a new direction. Successful companies and industries are always thinking about what is next.

Businesses generally follow an S-curve in their growth. After a period of investment and company-building, there is rapid revenue growth as the marketplace becomes aware of the business’s products and services and recognizes its relevance. Then the market catches up and growth stagnates unless the company innovates. When it does, it reaps the benefit of accelerated growth again.

The image below illustrates how this works.

I believe the autism services industry is at the inflection point of the S-curve. With great benefit to many thousands of people with autism spectrum disorders, ABA services are considered by most researchers, payors, legislators, and service providers to be the gold standard of treatment. In the process, and with the heightened demand for intervention, the delivery of ABA services has transformed into an industry. With over 30 financial investments in autism companies last year alone, the industry is quickly reshaping as investors look to scale services, leverage technology, and improve infrastructure and processes. But storm clouds are gathering.

We face a growing population of autistic adults who lack the necessary skills to live independently and whose parents are aging, unable to care for them much longer. What’s more, a growing number of children with autism are coming of age, many of whom lack the skills necessary for independent living, finding and maintaining employment, and forming intimate relationships. If the goal of the autism services industry is to prepare individuals with autism to live their lives as successfully as possible, there is a great deal of room for improvement.

An external force is at work as well and could be the main catalyst for evolution: third-party payers. Absent a coherent set of outcomes from the industry itself, insurance companies are beginning to dictate the rules of conduct in autism services, even though many lack the in-depth knowledge and expertise to do so. The best interest of autistic individuals risks getting lost in the maelstrom.

If we look at our industry objectively, we see one driven by short-term outcomes and often narrow commercial interests, rather than one united by a desire to discover and invest in the approaches that result in the best long-term outcomes for the population we serve. A regrettable lack of data sharing reduces industry-wide knowledge. Furthermore, a lack of universal standards and common measurements of outcomes stymies innovation across the industry. Without those clearly-defined, measurable outcomes that serve the long-term needs of our clients, we’re left with payors developing often poorly-conceived, short-term outcome values that fail to support the programs needed for adults so they can function independently.

As an industry whose purpose is humanitarian, we have our work cut out for us. We can stagnate and wither on the S-curve, or as an industry, we can innovate through the present challenges and reach a new age of growth, both in scale and quality of service. Any well-intentioned person in this industry prefers the latter. So, the questions as we look towards the future of our industry are: how willing are we to reject misaligned commercial interests and resist the temptation of shortsighted results? Can we instead work together, share information, develop common outcomes, and improve the results for our clients?

If we’re going to do it, we have to do it now.

 

For more on the future of ABA and autism services, check out my book, Autism Matters.

autism

Individuals with Autism Need Love Too

One of the most persistent misconceptions about people with autism spectrum disorder is that they are automatons without emotion. This arises from the fact that autism is at its core a communication disorder. People on the spectrum often struggle to show emotion, which can give the impression that they are uncaring.

Studies have shown that people with autism can have even more capacity for feelings than neurotypical people but lack the ability to express them.

In fact, the desire to connect with others and build satisfying relationships is universal, even for those whose style of communicating is not typical.

For adults on the autism spectrum, dating and romance are fraught with challenges. Dating is a complex, abstract dance whose rules are sometimes irrational and difficult to understand. For people already facing difficulty communicating and reading social cues, it can be maddening.

In addition, some of the subtle social cues – and even some of the more overt – can elude an individual on the autism spectrum. They might not realize that it is inappropriate to pursue a romance with someone already in a relationship, or who has expressed that they are not interested, or who is in a teacher or caregiver role or is under 16. The result can be humiliating and confounding.

Movies, YouTube tutorials, and websites dedicated to dating and romance for people with disabilities like autism spectrum disorder proliferate on the Internet. Among the most searched autism-related questions on the web is about whether people with autism can get married. (Of course they can, and many do.) At UCLA, a program called PEERS teaches social interaction skills to teens and young adults with autism spectrum disorder.

Despite this, most autism services are aimed at early intervention. Very little formal treatment addresses the topic of dating and romance for people on the spectrum, even though this is an essential part of a happy life.

Because the young adults targeted by the PEER program think concretely, many of their lessons lay out step-by-step guidance for how to act in various situations, including dating. Covered topics include how to ease into conversation and establish rapport before proffering a date request, and how to smile an appropriately coy smile, rather than a toothy grin when flirting.

Many individuals on the spectrum have an aversion to touching, though this varies widely from person to person. For many neurotypical adults, it would be difficult to date someone unable or uninterested in physical displays of affection.

With Valentine’s Day right around the corner, let’s not forget that people with disabilities possess the same innate need for love – platonic and romantic – as the rest of us. They may just express it differently.

To read more about the challenges facing the autism services industry plus ways we can advance care and improve outcomes for these individuals, check out my book!

with autism

Public Awareness and Understanding Create Safer Environments for Individuals with Autism

Most of the intellectual, emotional, and physical energy devoted to people with autism spectrum disorders focuses on their behavior and their understanding of the world. There is another component.

Our behavior and our understanding of them.

Imagine you were just as intelligent as everyone around you but functioned differently. You lacked the ability to communicate, to read social cues, or relate to others. Imagine that commonplace noises caused you physical and emotional distress.

Now imagine that, instead of removing those noises, or allowing you to escape them; instead of treating you with compassion for your deficits and disabilities; instead of making an effort to help you communicate your needs, people ridiculed you, shunned you and forced you to endure what causes you pain.

For many people with autism, that is their daily life. In my book, Autism Matters, I tell the story of Jared, a young man tormented by schoolmates. He complained, “They said I had poor social skills, but what about the kids who were bullying me; don’t they have poor social skills?”

More than social skills, many mistakenly assume people with autism have intellectual deficiencies. Some do, just as some neurotypical people do, but many autistic people are extremely intelligent. They must contend with that stigma on top of the challenges of their condition. “I have to work 10 times as hard as you,” Jared noted, “to be taken seriously.”

There are many examples of eminent scholars who have autism spectrum disorders, the most famous of whom is Dr. Temple Grandin, a professor of animal science at Colorado State University and a renowned consultant to the livestock industry. Dr. Grandin has been the subject of books and movies, but she is hardly alone among people with autism in her intellectual accomplishments.

We need to look no further than the very first person diagnosed with autism to appreciate the power of a compassionate community. Don Triplett, now 86, had the good fortune to be born into a prominent family in a small town. As autism’s Case 1, Triplett attained some notoriety and the support of the townspeople of Forest, MS, where everyone is his friend, and more importantly, his protector.

Others of that generation who today function in mainstream society are beneficiaries, like Triplett, of parents who refused to institutionalize them and instead demanded that they are treated like people.

That kind of compassion and understanding can alter the life of a person with autism, but it requires that neurotypical people rise above their basest instincts and find the best of their own humanity.

We have come a long way in science and in the general public in our understanding of autism and we have a long way to go. On both fronts, we have a responsibility to improve our knowledge so that the next generation of Jareds don’t have to endure the outrages he suffered. For the autism services industry, increasing community understanding of autism will be a continuing challenge going forward.

There have been many examples of community members or public officials reacting to with ignorance to people with autism – whether to a meltdown or a lack of communication – with disastrous results, even as disastrous as death. These represent the glass half empty side of the equation.

On the glass half full side, I detail in my book the story of author Russell Lehman, whose emotional outburst in response to flight delays at an airport drew a sympathetic response from an American Airlines ticket agent. Witnessing Lehmann’s tantrum, the agent comforted him and helped him calm himself, board the plane and reach his destination.

I look forward to the day when that is the norm and not a remarkable story worthy of inclusion in a book.