Learn from the autism community during Autism Awareness and Acceptance Month15 min read
April is Autism Awareness and Acceptance Month. It signifies both an opportunity to educate others on various topics surrounding those on the autism spectrum, and a call to action for everyone to ignite change — and support those who are leading the way.
Here below are various voices from across the state, sharing their viewpoints to help us all learn more about autism and hear different perspectives on living with autism — and how everyone of us can offer our support.
Autistic is not a dirty word, we are not broken
As an autistic person, I am often asked to describe and discuss autism. While I can only speak from my own experience, there are some common threads between me and my autistic peers.
In my work, I interact with hundreds of other autistic adults. We are often viewed as broken neurotypicals who need some adjustments to fix our flaws. We are not broken, and we do not need to be fixed or cured. Our brains work differently, and we experience the world differently than most. That does not make us less human.
We tend to see the world in much more detail than others. It is more colorful, noisy, textured, chaotic and intricate. There was an overpass I used to drive over with my parents that made a dreadful whistling sound. Every time I said, “What is that noise? Don’t you hear that?” And every time, my parents strained to hear and couldn’t make out the sound. It was so distracting that I couldn’t believe they couldn’t hear it. One day my mom finally heard it and we figured out that it was the wind rushing under the overpass.
As you can imagine, the world can be quite beautiful to experience with such intensity; but it can also be overwhelming and anxiety inducing — or downright frightening. It can feel like the world is attacking you.
Because of this, many of us are hypersensitive, hyposensitive or a combination of both. We need more time to process sensory information, including communication. We need breaks between activities that involve interaction with people and other activities with high sensory demands.
People often label these special needs. They are not special. Everyone, autistic or not, has the same needs: The need to feel safe, to love and be loved, to be accepted as we are and feel a sense of belonging. How each of us has our needs met can vary, but the basic human needs are the same.
Many of us don’t know until we are adults that others are not experiencing the world with such intensity. Until we talk with neurotypicals about how they experience the world, most of us think that others are just better at coping with it than we are. In fact, we are quite good at coping, given how intensely we experience life.
I often ask my peers what they most want neurotypicals to know about autism so I can advocate for our community. I will leave you with some words of wisdom from the autism community.
Autistic is not a dirty word. The majority of us prefer to call ourselves autistic. When in doubt, ask the individual how they prefer to identify.
We are not all savants, nor are we all intellectually disabled. We are not high functioning or low functioning. Each of us has aspects of life where we struggle, just like anyone else.
Autism is an inherent part of who we are. You can’t separate the autism from the person. Don’t love us in spite of our autism; love us because of our autism and all the other things that make each of us wonderful and unique.
Katie Oswald is an autism advocate and resident of Bay City.
Awareness of autism and acceptance are good, action is even better
April is Autism Awareness and Acceptance Month. The word “acceptance” was recently added, better reflecting the goal of inclusion, diversity, completeness and our core human connections to one another. And the Autism Alliance of Michigan would like to include yet another “A” to the description of this important month in our community: Action.
According to the Centers for Disease Control one in every 44 children is affected by autism spectrum disorders, with boys being four to five times more likely to be diagnosed than girls — over seven million people in the U.S. are on the autism spectrum. There are an estimated 50,000 individuals living with autism in Michigan, approximately 16,500 are school-age children. Furthermore, autism affects people from all racial, ethnic and socioeconomic groups.
The Alliance works to educate and expand acceptance and inclusion for individuals with autism, which is critical to ensuring those in the autism community can access what they need to live rich and fulfilling lives. To that end, we focus on three strategic areas: reducing the age of diagnosis; inclusive, equitable and high-quality education; and increasing employment and post-secondary educational opportunities. Through our MiNavigator program, we provide professional consultation and connection to services and supports and empowers caregivers to advocate for loved ones affected by autism.
Hiring individuals with autism is an untapped resource for Michigan employers. Up to 85 percent of autistic adults with a college education are unemployed, and over 70 percent of adults with autism are underemployed or unemployed. Given the current labor shortage, employers could benefit from expanding their pool of applicants through inclusive hiring practices. Autistic and neurodiverse individuals bring significant skills that can be harnessed when supported by inclusion and accommodations.
Two years of pandemic lockdowns, school and business closures, and other disruptors have been especially difficult for individuals in Michigan’s autism community, where structure and routine are often critical and communication, social and/or sensory challenges are typical. Individuals with autism frequently have less ability to understand and implement safety precautions in ways neurotypical individuals can. For some, wearing a mask is impossible, while others may have difficulty communicating symptoms of illness.
People with intellectual disabilities are almost six times more likely to die from COVID-19. Unvaccinated people are 10 times more likely to test positive for COVID-19,
17 times more likely to be hospitalized, and 20 times more likely to die.
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Following the release and accessibility of the COVID-19 vaccine, the Alliance joined statewide partners in advocating for COVID-19 vaccination in the autism community. Protecting people with autism through safe, effective and free vaccines is the best way to for the community to return to the routines of daily life, critical to all of us, but even more so for people with autism.
To that end, we are launching a $1.5 million, three-year education and engagement campaign to heighten statewide health and wellness opportunities for individuals in Michigan’s autism community.
Awareness, acceptance, and action — all are vital to improving opportunities for inclusive education, employment, housing, healthcare and long-term services and support for individuals with autism — no matter where they are in life’s journey.
If you or a loved one have questions or need assistance, contact the Autism Alliance of Michigan at 877-463-2266 or email [email protected]. Visit AutismAllianceofMichigan.org to learn more.
Colleen Allen is CEO and president of Autism Alliance of Michigan.
Keeping the autistic safe during COVID-19
As the parent of an adult with autism, I never thought twice about helping my son Edward get vaccinated against COVID-19. Our family has struggled and celebrated with Edward as he works to establish and maintain his independence. His job with Ford Motor Company is essential to his self-image and well-being. Following the company’s COVID-19 protocols was an adjustment, but getting vaccinated was safe, easy and the best protection for Edward and his coworkers.
People with disabilities have been disproportionately impacted by COVID-19. We know they are six times more likely to die from COVID-19 — and many experience limited access to routine, preventative healthcare. Even before the pandemic, people with disabilities were likely to report poorer health compared with the general population, including higher rates of diabetes, COPD, cancer and depression. Minimizing physical challenges through sensible preventive care and vaccinations — childhood, COVID and flu — provides members of our community with an extra measure of safety and health.
One thing we’ve all learned after two years of living in a pandemic: No one is protected against illness, disease or death unless most of us are protected. We know that viruses spread quickly among the unvaccinated and the effects can be devastating. Vaccines are our best protection, providing a barrier against viruses and minimizing impact if we do get sick.
I am so proud that the Autism Alliance of Michigan is joining forces with groups representing disability communities across Michigan to form Michigan Vaccine Partners. Group members — including the alliance, Michigan Developmental Disabilities Institute, Disability Rights Michigan and Brain Injury Association of Michigan — are ensuring maximum impact by coordinating efforts through a three-year campaign designed to educate and provide safe, caring vaccination options.
The partnership is working to create a consistent vaccination clinic experience that is accessible, inclusive, and welcoming to all Michiganders, especially those with disabilities. To accomplish this, clinical staff will complete disability training and establish new clinic protocols to ensure accessible, sensory-friendly, scent-free environments. Individual accommodation needs will also be discussed and addressed for each patient.
The group is also engaging with trusted community-based organizations across Michigan to host or support clinics designed to meet individual needs. MVP is working to dispel misinformation, provide science-based evidence and education, ensure greater equity and access to vaccinations and, ultimately, increase COVID-19 vaccinations throughout Michigan to better protect our constituents and the overall community.
I know what a difference vaccination protection meant to my son. Like all of us, Edward has had to accommodate many changes during the pandemic — no easy feat for a young man with autism. But I am proud to say that Edward is happy, healthy and employed in a job that means a great deal to him and, as his Mom, that means the world to me.
Joanna Lofton is a resident of Detroit.
Autism caregiving struggles were heightened during COVID-19
As the father of an adult son with severe autism, my family’s challenges have been great over the past two years. I imagine most parents and caregivers of children with autism and other disabilities have been in a similar situation during the pandemic.
Adequate, quality respite care from direct support professionals who assist people with disabilities in their everyday activities, coupled with limited public funding were challenges even before COVID-19. Given this workforce’s wage, training and credentialing limitations, it’s no surprise a workforce crisis exists.
We pay retail and restaurant staff higher pay than the professionals who care for our most vulnerable citizens. No worry occupies my mind more than: “Who will care for my son after I’m gone?” Without the peace of mind that he’ll live safely, comfortably and in a community that I know will care for his needs, I’ll continue to experience sleepless nights and wonder what his life will be like in the future.
During the first wave of COVID-19, my son’s group home experienced care shortages, limited — and at some points, total lack of — community outings and activities, and, yes, COVID-19 hit each resident. You can only imagine the fear that struck us parents. Given the increased risk of severe illness and fatality for people with disabilities, combined with the need for quarantine and our inability to just be at their side for com
fort was one of the most challenging moments of my life — and I imagine his.
Timmy is nonverbal. He has sensory challenges, limited comprehension of instructions and struggles with compliance measures. How would he understand all the changes to his routines, caretakers, daily activities and then, on top of all of it, his father or sister not able to be at his side to bring some context and familiarity to a world turned upside down?
As the crisis of the pandemic wanes, for which I am grateful beyond belief, I am reminded of how crucial good caregivers and community inclusion are to people with disabilities and their families. We have witnessed some encouraging shifts like increased awareness of this crisis by legislators and creation of a statewide task force.
These changes, in hand with engaging caregivers with sustainable wages, providing necessary training and advocating for credentialing changes, are all factors that impact the quality-of-care for people with autism and their families. And families depend on caregivers — they are stand-ins when we can’t be there.
Timmy deserves a quality of life that affords him the predictability of family, peers, support, and activities that just make him happy. When he’s happy, I am happy. It may seem basic, but it’s all I need to sleep at night.
George Kelly is a resident of Livingston County.
Autism diagnosis, access to services still show disparities by race and gender
In the earliest days of the pandemic, it was obvious that some communities felt the impact at an entirely different level than others. While we have only begun to recognize and document disparities in the autism community, we know they also occur based on gender, race and socioeconomic standing.
Autism can be difficult to diagnose, especially since clinicians must engage with very young children. Boys are four times as likely to be diagnosed with autism as girls, but a growing body of research indicates that new methods may be needed to successfully diagnose girls.
A recent study by Children’s Hospital of Philadelphia and supported by the Autism Science Foundation found that autistic girls use different, more cognitive language to describe their experiences, which can lead to clinicians ruling against an autism diagnosis. Other studies show girls appear to be more adept at masking autism symptoms, and are more likely to be misdiagnosed with depression or anxiety instead. We know that early diagnosis leads to better outcomes. These and other studies promise to change the way we understand and diagnose autism in girls.
With appropriate developmental surveillance and screening, a child with autism may be diagnosed and treated younger than two years of age; however, the national average age of diagnosis in the United States remains between four- and five-years-old. That average is delayed even further for children of color.
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According to a 2015 article in the Journal of Developmental Disorders, diagnosis for African American children occurs an average of 1.6 years later than white children, and Black children are also 2.6 times more likely to be misdiagnosed — they are 5.1 times more likely to receive a misdiagnosis of adjustment disorder and 2.4 times more likely to receive a conduct disorder misdiagnosis.
The American Academy of Pediatrics published a study in 2020 noting that Black children with ASD were diagnosed an average of three years after their parents expressed concerns about their development. For children in families where English is not the primary language, there is yet another barrier. Both Black and Latinx children often experience stigma and lack of access to healthcare services due to lack of income or citizenship.
Sometimes it takes a cataclysmic event to draw attention to obvious truths. The pandemic cast a harsh light on the disparities of healthcare that initially allowed COVID-19 to claim more lives in communities of color than in white communities.
Surely, that is a lesson for all of us. We have identified the challenge. We can and must do better. Our children’s future depends on it.
Kanika Littleton is the director of Michigan Alliance for Families in Lansing.
Opening doors to a diverse workforce includes the autism community
As the senior vice president of global human resources at Kellogg Company — a major employer in Southwest Michigan — I can attest to the challenges companies face in finding good talent in this competitive job market. A variety of positions go unfilled every day. And as the parent of a young adult with autism, I also know that this is a population with the ability to significantly contribute to Michigan’s workforce, addressing the critical business need employers are facing today to fill positions.
My son has skills and interest in hospitality, for example. He would like to secure a job where he is able to provide value to an employer while building skills for his future, even to the point where he could live independently. This dream of independence is the dream of any parent but is especially true for those of us with children with autism or related disabilities.
The estimated unemployment rate for people with autism is almost 90 percent. Autism is characterized by challenges in areas of social interaction, communication and unique behavioral challenges. However, these challenges by no means should imply this population is unemployable. In fact, with adequate support, an employee with autism can thrive.
Kellogg has partnered with the Autism Alliance of Michigan to recruit, hire and support employees with autism. This partnership supports the person affected by autism coming into our company and also provides training and education for Kellogg employees, managers and even our executives to create a welcoming, inclusive culture — as part of our overall commitment to equity, diversity and inclusion. A comprehensive approach considers race, gender and age — as well as ability and neurodiversity.
At Kellogg, we consistently find that the result of this hiring is a mutually beneficial relationship: We give a person with autism an opportunity to earn a salary and become part of our Kellogg family, and every employee who works with that per
son benefits. We appreciate that talent doesn’t always present as the “typical” employee we are accustomed to, but when we step outside of our usual recruitment efforts, we open ourselves to untapped talent that benefits our company above and beyond our expectations.
April is Autism Awareness and Acceptance Month. What better time than now to take the steps necessary to open your doors to a neurodiverse workforce within your organizations and companies? Given the latest CDC autism incidence rates of 1 in every 44 people, just about everyone at some point in their lives will know a person with autism — be it family member, friend, neighbor or colleague.
Michigan employers: Let’s build the kind of community where opportunity to live and work in a supportive environment exists for everyone, not just those who look and behave like ourselves.
Melissa Howell is senior vice president of global human resources at Kellogg Company.
The future looks bright for people with autism, if we continue to show our support
What could the world look like if an estimated one in every 44 people with autism and their families, especially those in under-served, low-income areas could easily find providers and the support they need? Or if mental health parity laws address the age caps and restrictive diagnostic protocols often required to access autism services? What if our schools were well-prepared to support all children with autism, be it training and resources for the most severely affected or those with average and above average cognitive ability? And what if adults with autism had access to services only offered to children?
All the above are steps in the right direction. Over the past 10 years, we’ve seen great progress. Autism Alliance of Michigan helped lead the charge in 2012 for passage of autism insurance reform, mandating that insurers cover evidence-based treatments for autism.
The argument for passing these insurance reform laws was sound. The opposition to these bills at the time was related to the costs of critical, evidence-based interventions estimated to be $50,000 per year. However, we put those costs into context, demonstrating that the true cost of an untreated person with autism over the course of a lifetime is estimated to be more than $350 billion.
The return on investment was clear: A treated child would need fewer — if any — special education and vocational rehabilitation services, would become less dependent on public assistance and would have a greater chance of securing employment, contributing to the state’s economy one day.
Since insurance reform passage, demand for autism services has exploded in Michigan. Thousands of children who previously would have gone untreated are now receiving life-changing therapies, putting their futures on a drastically different trajectory.
But many challenges remain in meeting the needs of people with autism: Many children still sit on waitlists for diagnostic and therapy services, delaying that critical intervention phase. A shortage of trained behavioral health professionals contributes to this problem. Many regions of the state are still depleted of resources, services and support. Many schools are not adequately equipped. Age caps still exist for many services, leaving the adult population without treatments known to improve skill and behavior.
We must also serve the “lost population of adults” who will never benefit from the early interventions now available to children. Severe behavioral challenges and psychiatric crises are the unfortunate results. Our current service systems are not trained to address this problem.
During Autism Awareness and Acceptance Month, help us keep our collective foot on the pedal to increase and enhance critically needed services for people with autism. Contact your lawmakers and the Department of Health and Human Services to support mental health parity initiatives, adequate funding to address psychiatric crises and remove overly restrictive requirements to access diagnostic services.
When we look back 10 years from now, we want Michigan to be known as the national gold standard in services and support for people with autism.
Chaunta Tsegaye is an insurance specialist and program manager with the Autism Alliance of Michigan.
Local viewpoints such as these are curated periodically by LSJ staff for the opinion page. Check out our opinion guidelines and FAQ for more information; to submit, email [email protected].