A Different Kind of Autism Awareness Month

A Different Kind of Autism Awareness Month

April is Autism Awareness Month, but unfortunately we will not see a Walk for Autism, Autism 5K, cookie fundraisers or Awareness Day celebrations during this extraordinary and unprecedented time.That doesn’t obviate the need or desire to increase awareness and understanding of autism throughout our country – and the world. It just requires some creativity to penetrate the consciousness of a population whose attention may be focused on the Coronavirus pandemic, social distancing and flattening the curve.

This is the 48th anniversary of the first Autism Month and in that time awareness has indeed exploded in concert with the incidence of the condition. Yet there is much work to be done before communities and policy makers have a firm grasp of the abilities, challenges and needs of autistic individuals. While the Covid-19 pandemic is a sudden global health issue today, autism is a daily global health issue that has been growing for decades and will continue into the future.

To recognize Autism Awareness Month while maintaining a safe distance from others will require individual initiative  and creativity this year. Here are just a few suggestions for actions you can take to promote understanding of autism and autistic individuals.

1. Find Events That Have Been Moved Online

Not all events have been cancelled. For example, the South Austin Support Group in Texas has been moved to Google Hangouts, where parents and caregivers can find a supportive community to discuss issues they face. A similar group in El Paso has been moved to Zoom, where participants can see and talk to each other in real time.

2. Share Best Practices with Others

You likely know people in your community who struggle with the issues around autism, whether they are autistic adults, parents of children with autism, caregivers or others. Take this time to reach out to one or more of your neighbors to lend support and trade tips you have discovered.

3. Celebrate Your Child’s Accomplishments

With all the stressors that Covid-19 brings, it is easy for parents to become despondent about their children’s progress. More than ever, this is a time to appreciate whatever strides your children have achieved. Take a little time each day to congratulate yourself and celebrate your child for the progress they have made.

4. Educate Your Co-Workers About Autism

You may be reticent about sharing your personal issues with co-workers, but Autism Awareness Month provides an opportunity to make an exception. And while you may not be working alongside your co-workers these days, you’re probably still communicating with them extensively. Discussion of the effect of distancing, school closures, and changes in routines on home life is the perfect entrée to a short education of the challenges and triumphs of having a child with autism.

5. Join a Webinar

Catch up with the April 4 webinar Autistic Explosion with Dr. James Coplan, who employs 3D modeling to illustrate the scope and types of autism. It has been recorded and is available online.

6. Support an Autism-Friendly Business

Families for Effective Autism Treatment in Louisville has created a registry of autism-friendly businesses in their area. Verywell Health, an online resource for medical information, has compiled a list of autism-friendly national businesses that includes companies whose products and services you could be purchasing now, like Microsoft, Home Depot, Walgreens, Ford and Smile Biscotti. These companies are intentional about hiring and training autistic individuals.

7. Lobby Your Legislators for Changes During the Covid-19 Crisis

Writing for Spectrum News, disability rights activist Ari Ne’eman has identified several legal constraints on caregiving to people with disabilities, including autism. He encourages others to lobby for removing caps on worker overtime, permitting family members to serve as support workers, preventing “temporary” institutional placements and ensuring continued oversight of group homes and other institutions for the disabled. Read the entire article here.

8. Focus on Your Child

The best advocacy any parent can do is with their own child. Advocacy takes place with your child’s teachers, in your neighborhood, on the playground, at the City Council, or anywhere others need to be educated about autism and persuaded to treat autistic children appropriately.

9. Make Every Month Autism Awareness Month

With two percent of children born today on the spectrum, ignorance and misunderstanding of the issues affecting autistic individuals will have significant and long-term ramifications for our nation. Let’s work to improve awareness and insight year-round.

Published By:
Ronit Molko, Ph.D., BCBA-D

Home-Based Vs Center-Based Services for Autism

Home-Based Vs. Center-Based Services for Autism

When I first began working in the field, autism interventions were primarily offered in clinic and research-based settings. As those therapies and the scientific understanding of autism evolved and as the demand for services has grown, a market for home-based and community-based services emerged. Services are expanding and the availability of funding is increasing, resulting in massive growth in this sector of the behavioral health market—with more services being offered in homes, schools, and centers nationwide. It is encouraging to see increased access to intervention and broader service offerings for individuals diagnosed with autism and their families. More treatment setting options result in reaching more people in need.

While school-based intervention exists to aid children in their ability to learn and interact in their school environment, center and home-based care focus on skills for success and independence at home and in the community. These types of intervention also teach other critical life skills. Often, the setting in which a child receives services is determined by the funding source or the availability of services in the community in which they live.

There has been much debate around whether services delivered in a center are better than services delivered in the home and vice versa. Some research suggests that an ideal program may be a hybrid mix of both home-based and center-based services. Studies have shown that children made great developmental gains in gross motor, fine motor, and language skills in center-based programs. Conversely, children made great gains in self-help and social skills by participating in home-based programs. While some service providers promote only one specific setting for intervention, research has demonstrated benefits to both. The critical variables that determine outcomes are the quality of treatment and the involvement of others, as well as a variety of other factors.

The Pros and Cons of Home-Based vs. Center-Based Services

The biggest benefit to home-based intervention is that it allows children to learn skills in their home environment where they feel comfortable and secure, and where they naturally spend their time at a very young age. This intervention also lends itself to the involvement of caregivers. Essential daily living skills, like hygiene or personal care, eating, and bathing, are typically easier to teach in the environment in which those activities occur.

Many states and payers advocate specifically for services to occur in the home. However, living situations, work schedules, availability of services, and other variables may preclude some families and individuals from home-based services as a primary treatment option.

Environments can also be manufactured in center-based intervention to expose children to specific situations and teach critical skills. For example, if a child is preparing to attend school, staff can create an environment that mimics the classroom and help the child learn the basic skills, like following directions and participating in a group environment.

There is considerable discussion in the literature about the generalization of skills which is a critical component of skill acquisition and development. Individuals with autism often experience challenges with generalizing a skill that was learned in one environment and moving it to another environment or another person. For example, if a child learns to respond to a request delivered by a specific interventionist in a specific room, the child may not respond to the same request when delivered by a different interventionist or in a different setting. Historically, research has demonstrated that generalization of skills is compromised when services occur in a center-based setting. More recent research focusing on parent behavior has shown that parents who participated in a center-based training program focused on facilitating generalization of skills in their children at home implemented the program successfully. Their children maintained their skills acquisition in multiple environments.

Providing intensive center-based services to children under the age of 5 presents considerations that need to be accounted for. For example, most children under 5 need to nap during the day. Maintaining a routine of appropriate nap time is critical for the development and growth of young toddlers’ and children’s’ bodies and brains. This complicates service delivery because of space requirements and noise restrictions, as well as the costs of maintaining staff during these activities. Some centers fail to meet this need. One can also question whether it is appropriate for a young child to be receiving intervention in a center for 8 hours per day.

Parental Involvement

Regardless of whether the program is based in-home or at a center, service providers should emphasize the importance of parental or caregiver involvement. When the parents or caregivers are included in the treatment program and learn the skills and strategies to continue the program on their own, the child can be completely immersed in the intervention. This establishes a system of contingencies and reinforcements that continues consistently at home and at the center—twenty-four hours a day, seven days a week.

Service providers should work with parents or caregivers to help define goals. The goals should be small at first to help facilitate the parents’ or caregivers’ participation and confidence as “teachers.” It is also important that the goals be relevant to family life, such as eating and sleeping habits, and that they are tailored to fit into the natural routines of each family.

Specialists providing home-based services face the unique challenge of having to provide intervention within an existing family dynamic. Sometimes that dynamic can be very challenging. The ideal situation utilizes caregiver or parental support. However, in some cases, this kind of support is not possible. That’s why it is particularly important that additional options be made available to the market; whether they be center-based, or even hybrid in nature.

As autism prevalence increases and more children with autism prepare for adulthood, the autism services industry needs to advance with the growing need. Early intervention and therapies that teach important life skills are increasingly important. Center-based intervention with caregiver involvement can be a very valuable option. But whether a child’s best program is home-based, center-based, or a combination, there is room for advancement and enhancement of current programs, services, and outcomes.

investment

A Social Impact Through Investment in Autism Services  

An imperative for many investors today is to do good as they do well. Socially conscious investment is fueling many sectors of the economy, from alternative energy to continuum of care communities by combining the best of the head and the heart. Savvy investors provide their business acumen and management expertise to help these industries prosper.

Investing in autism services offers a tremendous opportunity to earn a significant return on investment, both financially and socially. There is a global need for autism services that is growing rapidly and has the potential to transform people’s lives. Socially conscious investors will find an industry that is not well-understood or capitalized and is ripe for new, more collaborative business approaches.

I believe that autism services are ripe for behavioral healthcare companies that have a heart for helping and the entrepreneurial spirit that drives business innovation.

The autism services sector needs more of these investors and the clients of these services would benefit from improved business practices in the field. More investment will create more trained professionals and increase the number of service providers. More providers will be able to help more individuals and better prepare more schools to work with children with autism.

 

The Need for Standardized Outcomes
A critical need in autism services is for standardization in measurement across the industry. Currently, data collection and analysis is random and inconsistent, and outcomes are starting to be defined by insurance companies rather than by clinicians. This is a dangerous path that does not bode well for clients of autism services.

If instead, new investors brought additional resources and their sophisticated business minds to the sector, they could professionalize its business practices. Almost certainly this would include development of standardized outcome measurements across the industry. In this way, greater capital investment can change the entire landscape for individuals living with autism and their families.

 

Profit and Care Can Live in Harmony
There are those who believe that the rush for profits is incompatible with compassionate patient care. In practice, there are certainly those organizations that have lost sight of the delicate balance in a greedy headlong rush. But the reverse is a problem too: any company that fails to apply the best business practices will either cease to exist or limp along providing second rate services to their clients.

The free marketplace is an adept Darwinist, dispatching those outfits that fail to keep up with business innovations and punishing those that provide poor customer service.

Enlightened self-interest is another driver of wise investment in autism services. The autism diagnosis has exploded in the last couple of decades – one in 59 children born today is diagnosed along the spectrum – and the cost to society to support an autistic individual across their lifetime is somewhere in the vicinity of $2-3 million. A 2014 study found the total cost of autism in the U.S. alone is roughly a quarter of a trillion dollars. This burden is borne by each of us.

 

As a consultant to private equity firms and companies in the behavioral healthcare marketplace, I am a firm believer in financial and social ROI. Good business can improve the quality of people’s lives and strong results are good for business. It’s why I’ve committed my company, Empowering Synergy to that exact mission.

Autism services

Compassion and Understanding Should Always Inform Therapy

Imagine this scenario: you are providing therapy to an autistic child and they begin to fidget, twirl their hands, rock back and forth, scream and ultimately escalate into a meltdown. They refuse to make eye contact when you attempt to engage them and continue to thrash about without apparent purpose.

It is understandable to assume the child is refusing to comply with your requests and become frustrated with their outburst. But let’s put ourselves in the child’s shoes for a moment and recognize that they are communicating something very powerful: I’m in pain or I’m anxious or I’m overstimulated.

In therapy, it’s critical to consider the situation from the child’s perspective. Perhaps they have a hypersensitivity to the humming of fluorescent lights in the room, or the chugging of the air conditioner, or the buzz of ambient conversation. These stimuli barely ripple in your consciousness, but they are causing pain and anxiety for the child in your care.

The child wants to remove themselves from the ongoing physical distress but lacks the communication skills to ask calmly to exit the room. And so they have a meltdown.

If we alter our perspective a bit we can see that this behavior is a form of communication. We understand this with infants: a baby that cries loudly for no apparent reason is telling us something – they are hungry or tired or uncomfortable. We respond with compassion by offering them a bottle or putting them to sleep, or changing their diaper.

Similarly, a meltdown by an autistic child is an attempt to communicate illness, pain, fear, confusion, overstimulation or something in the environment that is bothering them. The actions in which the child engages, though they appear anti-social and self-destructive to us, provide sensory stimulation and a release of anxiety.

Recognizing that autism, or disorders along the autism spectrum, involve biologically-based behavioral excesses and deficits that are beyond the control of children with these conditions, can help us as therapists, parents, caretakers, and others respond with compassion to the pain they are suffering. Autism subjects children and adults alike to near-constant discomfort, anxiety, and/or pain that is difficult for the rest of us to empathize with. The better we understand this, the more effectively we can make therapy a better experience for everyone.

Even “high-performing” adults with autism whose communication skills are highly-evolved face similar stresses. Many highly intelligent adults with autism avoid education and career opportunities because the anxiety of navigating crowds, rules and interpersonal relationships is upsetting and overwhelming.

September is Pain Awareness Month, a good time to remind ourselves that people with autism are people first. They want safety and security and freedom from fear and pain just as the rest of us do. But their autism often puts them under a state of almost perpetual sensory and emotional attack. Trying to understand what others are experiencing in moments of need is the first step to compassionate and helpful responses.

If you’re looking for other ways that we can all work to improve the autism services industry, read more in my book, Autism Matters: Empowering Investors, Providers, and the Autism Community to Advance Autism Services.

Better outcomes

Better Funding Through Meaningful and Standardized Outcomes

The autism services industry – grounded in a desire to help people with autism live long, happy, independent lives – is hamstrung by an inability or overall lack of interest in developing a relevant outcomes measurement system that goes beyond measures of progress for individual consumers of the services.

This failure is rooted in competition among providers, the intervention of third-party payers, and a short-term outlook that doesn’t serve the lifelong needs of the clients themselves.

Unless providers wake up to the necessity of relevant and comparable outcome measures, insurance companies lacking expertise in the specialized subject of autism services will set the reimbursement rules based on misguided outcomes, distorting the delivery of services in manners detrimental to the health and well-being of autistic children and adults.

This is an industry ripe for reform in its outcome measurement. The key will be for providers to overcome their competitive instincts and recognize that development of meaningful and shared outcome measurements is critical to the success of everyone’s business – and to the long-term progress of clients.

Currently, it is not possible to compare one provider’s outcomes to another or to differentiate between providers on this important metric. The lack of established standards in autism services has created a vacuum, which third-party payers, those who now pay for the bulk of services to special needs children, are beginning to fill. Insurance companies with a limited understanding of the complexities and nuances of a well-constructed applied behavior analysis (ABA) program have begun to step into the void and determine which services will be reimbursed and how they will be measured. This third-party creation of the criteria for data collection and measurement of outcomes which form the basis for determining the future of much needed-services is not conducive to good science nor to the future of services for individuals who desperately need them.

Then there is the issue of myopia in outcome measurements. It is important to measure how well a child has progressed over one day, one month and six months of service. But the current state of the industry pays too little heed to whether the beneficiaries are prepared to live, work and relate to their fullest potential as adults. While services are generally delivered to children until early adulthood (0-18 or 22), providers must consider what years 20-78 will look like.

The result of that short-term care horizon, according to a Drexel University study, is that distressingly large numbers of autistic adults lack employment – a key driver of self-esteem, social skill-building, and independence. More than half suffer health issues and 58% are overweight or obese. Few choose their own living arrangements, with three-quarters living with a relative or in a group home.

Other studies have found that fewer than half of autistic adults today have a single friend who is not a relative or caretaker. Current methods of service delivery focus mostly on childhood progress without considering the functional long-term ramifications for clients.

Why is this a concern to anyone beyond providers? Because the skyrocketing rates of autism – now one is 59 newborns – means this is an issue that is starting to affect us all. Failing to promote independence and self-sufficiency imposes costs estimated between $1.4 million and $3.2 million over an individual’s lifetime, a cost all of us will have to bear.

It cannot be stressed enough how critical it is for providers across the industry to collaborate, communicate, and establish agreed-upon practices for measuring and evaluat­ing outcomes. Competitive inclinations need to be set aside, and standards must be determined. Failure to do so prevents us from clearly assessing how well we are doing and effectively finding ways to improve.

What’s more, when we allow insurance providers to determine how success is measured, we are giving away the most important power that we have as an industry. Establishing how we define success and what we consider meaningful outcomes for autistic individuals must be a power that resides with industry experts and those whose lives are most affected by these services. And, most critically, our goals as an industry must not become distorted by a dispassionate pursuit of profit.

Neurodiversity in the workplace

The Benefits of Neurodiversity in the Workplace

Large corporations such as SAP, Hewlett Packard, Microsoft, Ford, IBM, and others have recognized the competitive advantage of neurodiversity and begun to utilize the special gifts and talents of individuals with autism and other neurological differences to improve the workplace. Small businesses as well can and should utilize these benefits.

 The Rising Tide carwash in Parkland, Florida is not your typical carwash. Customers laud their attention to detail and exemplary service.  Rising Tide’s primary mission is to employ adults with autism.

“We view autism as one of our competitive advantages,” says the company’s COO Tom D’Eri. “[Our staff] have a great eye for detail.”

In 2013, Tom’s father, John D’Eri, founded Rising Tide. His hope was that the car wash would provide his then 24-year-old son, Andrew, with purpose, fulfillment, and the ability to live an independent life.

Like many parents of individuals with autism, John was afraid of what would happen to Andrew once he was gone.

“I don’t want him to sit in a room, taken care of by others once I’m gone,” John says in this video report on the Rising Tide carwash. “I want him to have a job, I want him to have friends.”

The carwash has fostered purpose and independence for Andrew as well as many others. The company’s staff is almost entirely made up of autistic individuals; something which Tom believes gives them a competitive advantage:

“There are really important skills that people with autism have, that make them, in some cases, the best employees you could have.”

What John and Tom understand is something many small businesses could benefit from: the value of neurodiversity in the workplace. This is something that many large corporations are already using to their advantage.

In 2015, Microsoft announced it would begin hiring more autistic people. Corporate vice-president Mary Ellen Smith stated that “People with autism bring strengths that we need at Microsoft.”

A company like Specialisterne, for example, is a big reason why hiring neurodiverse individuals has become more and more common for large companies like Microsoft. The worldwide social innovation enterprise is dedicated to helping neurodiverse people enter the workforce at high levels. According to the company’s website, Specialisterne has set the “gold standard” for neurodiversity employment, working with companies like SAP, IBM, and PricewaterhouseCoopers to find placement for people on the autism spectrum and other neurodiverse individuals. Specialisterne’s Irish branch, hosted by SAP, is helping the software giant increase its number of neurodiverse employees from seven individuals to one-percent of its global workforce (roughly 650 people).

Individuals with autism see the world differently than neurotypicals do. They have unique talents, perspectives, and skills that can be tremendously beneficial to businesses and society. The problem is that autistic individuals face stigma rooted in misunderstanding and ignorance. Additionally, individuals with autism often have eccentricities, lack social skills, have sensory intolerance issues, and can be blatantly honest. Because of these traits, individuals with autism often have trouble getting past the interview stage for a job or maintaining a position once they are hired.

All businesses looking for dedicated employees should strongly consider what neurodiversity can bring to their organization. John and Tom at Rising Tide carwash are just one example. They’ve now opened a second location, and have started Rising Tide U, a training organization that provides a blueprint for families who want to start a business to help their loved one with autism gain purpose and build a future for themselves.

While it is tremendous to see large corporations recognizing the value of neurodiversity, Rising Tide shows the potential for small business to do the same with their workplace. Not only does an autistic staff with an extraordinary attention to detail provide a competitive edge for the company, it is also a powerful way to change people’s perception of individuals with autism while also providing employment opportunities to a sector of our population who deserve the opportunity to contribute to society.

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