autism

Disappearing Into Normality: Understanding Autism on Its Own Terms

The popular paradigm to describe individuals on the autism spectrum is linear: we conceive of individuals as mildly, moderately, or severely impacted by autism. These categorizations are also used diagnostically to determine how a person’s life and functioning is affected by their autism. Put another way, autistic individuals are referred to as needing lower-support or higher-support, often depicting how others perceive their functioning and adaptability. 

We measure the place individuals occupy on the continuum primarily by their ability to communicate, socialize and act “normal.” Interestingly, we do not speak about other populations or groups of people this way. We recognize cultural differences, language differences, and expect that people from different parts of the world will behave differently. But when it comes to individuals with disabilities we differentiate on a spectrum of “normal”.

Of course, there is nothing inherently better about “normal.” It’s simply the norm—the way most of us have agreed to act. “Non-normal” socialization is not necessarily worse.

The Speciousness of Normal

So, which of these individuals with autism is more “normal” as we define it: the highly verbal, articulate person with a college degree who becomes incapacitated when overwhelmed by sensory inputs and struggles with anxiety and/or depression, or the person with communication challenges limited to simpler, possibly repetitive tasks who accomplishes them every day and enjoys a social life, explores their passions, and lives with a degree of independence? 

The first person appears “normal” to neurotypical people most of the time but encounters significant life challenges, many of which are not visible. This is why “normal,” as a qualifier, doesn’t carry much water.

The topic of normality and autism came up in my recent conversation with Dr. Sue Fletcher-Watson, a Chancellor’s Fellow at the University of Edinburgh’s Centre for Clinical Brain Sciences. She has conducted significant research on intelligence and socialization of individuals on the autism spectrum.

Dr. Fletcher-Watson believes that the great untapped reservoir of information about the struggles of autistic individuals comes from those struggling with the condition themselves. 

“I think we really need to systematically explore how [the recommendations of] able, articulate, autistic adults can be translated into good practice for young children, people with learning disabilities, people with communication challenges, and so on,” she said. 

“We’re looking at developing peer support models which would include matching newly- diagnosed autistic adults with people who have had a diagnosis for a while, and are very established in the community, but also maybe pairing parents of autistic children with an autistic adult, to get their insights and their perspective.”

Segregate or Integrate?

There is an ongoing discussion in the disability community and the legislature about the relative merits of organizing people with disabilities into their own communities. As research has demonstrated, and I have documented here, people with autism often report that they socialize more successfully with each other than with neurotypical people (and vice versa). Living within their own communities is often preferred and provides individuals with autism the freedom to organize their lives around their own social norms.

This would argue for creating communities of people with autism.

But many are suspect of creating living environments that could mimic institutions, weary of the way we institutionalized people with psychiatric conditions in the U.S. in the 1960s and 70s to disastrous effect. Today, federal law requires that many residential facilities for individuals with disabilities must be integrated with a certain number of non-disabled people.

Many caregivers and people with autism chafe at this law. 

It’s a conundrum, Dr. Fletcher-Watson and I agree. After all, people with commonalities of all types organize themselves into segregated communities, whether it’s senior living communities for older people or summer camps for children with cancer.

What marks these communities as special are the commonalities in life experiences the members share, and the social norms inside them, which could be beneficial to people with autism who are naturally governed by norms not shared by the rest of society.

Dr. Fletcher-Watson describes the conundrum this way: “On the one hand, what our data seems to be saying is that we should provide opportunities for autistic people to be together. I’ve met autistic adults who’ve never met another autistic person, and that’s heartbreaking. So, that’s really important, to provide those spaces. But the risk is that you can also create a ghetto.”

The solution might be to allow people on the spectrum to choose their own living arrangements, and if the results are organic, successful communities of people with autism, then we should be grateful for a concept that improves their lives. At the same time, individuals with autism who prefer to mainstream their living situations would have that ability, offering everyone the opportunity to choose the lifestyle that best suits them.

 

For further reading like this blog, check out a copy of my book, Autism Matters.

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.

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