An Honest Look at the Full Experience of Autism with Russell Lehmann

Motivational Speaker and Poet Russell Lehmann joins us to share his perspectives on autism and the human condition. Having spent most of his life in isolation, Russell has found his voice and independence in recent years. His passion for erasing stigma and stereotypes about autism is shared through his moving, spoken-word poetry. As Russell shares, “I like to say you hold up a mirror to anybody, and that’s what autism looks like. I don’t expect anyone to be able to tell that I have autism just by looking at me. But hopefully, someday they won’t be as shocked to find out.”

All Autism Talk (https://www.allautismtalk.com/) is sponsored by LEARN Behavioral (https://learnbehavioral.com).

The Autism Journey: Accepting vs. Resisting A Diagnosis

BY: NICOLE ZAHIRY, M.A., BCBA
BEHAVIOR ANALYST SPECIALIST, AUTISM SPECTRUM THERAPIES

 According to Autism Speaks, in 2021, 1 in 44 children in the United States were diagnosed with autism spectrum disorder (ASD), with boys being four times more likely to receive a diagnosis than girls. A diagnosis, of any kind, means something different from family to family and is often colored by their culture, belief system, generational influences, and socio-economic factors.

For some, a diagnosis provides validation—there is a name for the group of symptoms parents, friends or family members may have observe (or comment on)—things like: a language delay, “quirks” in social skills, atypical behaviors, or excessive tantrums. The diagnosis can be affirming; for moms, in particular, there may be a sense that their “gut” was right. It may be a sigh of relief that their intuition has been validated in the form of a recognizable diagnosis — something more than just an instinct felt deeply in some intangible way. For others, a diagnosis can be a devastating surprise — one that catches unsuspecting parents off-guard and leaves them feeling overwhelmed and underprepared.

Whether a parent has suspected something all along or is taken aback by a diagnosis, all families grapple with making sense of what it all means. The hard part, for many families, is being patient, hopeful, and resolute when the questions far outnumber the answers.

After a Diagnosis

Arguably, one of the hardest parts of the journey for parents of children with ASD, is the beginning. The unknowns are pervasive. The information “out there” is wild. Google is daunting (and often alarmist), and questions lead to more questions even before the diagnosis has been fully digested. Parents may begin asking themselves and others: What is ASD? What does it mean? Will my child learn to communicate? Will his/her behavior ever improve? What now? What do I do? What treatments are available? Why is this happening?

One truth about ASD is that autism is different for each autistic individual. As autistic professor and advocate Dr. Stephen Shore says, “If you’ve seen one person with autism, you’ve seen one person with autism.” And, it’s true. Autism looks, sounds, feels, and behaves differently for each autistic child.

A neighbor, friend, or family member’s autistic child, his/her skills and strengths, areas of need, where and how much he/she is impacted by the diagnosis, will all vary. Every child is unique. Every autistic child is too. Comparing one autistic child against the skills of another can be, at best, misguided and, at worst, detrimental. The best (albeit, the only) way to answer some of those nagging questions is to submit to the journey of autism and start down its road one step at a time, minute to minute, hour by hour, day by day.

The Journey of Autism: Resistance and Grief

There’s no doubt that undertaking something new can feel overwhelming. After all, autism is a journey most parents are ill-prepared to begin and may resist undertaking altogether. Beginning a journey with few answers, little information, and no preparation makes even the boldest and bravest among us uncertain. But, as the old adage goes, “A journey well begun, is half done.” For parents, beginning the autism journey on the right foot often means acknowledging resistance, grief, and other feelings about the diagnosis before heading down the road.

Resistance, in the beginning, often shows-up in unhelpful ways and can breed doubt or distrust and delay access to important early interventions. It often comes from a place of grief, guilt, or anger:  Could the doctor be wrong? Did I cause this? Maybe my child will “outgrow” it? Maybe my child is just “slow”? It can be difficult to side-step resistance and forge ahead when many questions remain unanswered. But, the autism journey is not linear—emotions, feelings, and reactions will not be either.

Later on, resistance can become an important component of advocacy. Resistance may prompt parents to speak-up/stand-up, and communicate to care providers if/when assessment, placement, or goals do not align with their (or their child’s) objectives for treatment. Resistance gives parents a new voice; it can lead to useful insights, self-reflection, and those wonderful “lightbulb” moments that have the power to remove roadblocks and push treatment forward.

Processing grief is sometimes an uncomfortable but important additional step for parents new to the journey. All the unknowns can be heavy; grieving the weight of those worries is important. It is OK to be sad. It is OK to feel loss. It is OK to shoulder that grief with a partner, a trusted friend, a therapist, or a family member. It is also OK if parents don’t feel these things, either.

But for those that do, it is critical to recognize that grief or sadness will eventually make way for other emotions and lend themselves to a steadfast resiliency that treatment, therapy, and advocacy often require.

It’s important to acknowledge that grief can (and often does) exist alongside hope, love, and other complicated feelings—sometimes competing for attention. Accepting a diagnosis is not the absence of grief, but rather, an acceptance of it. It is an acknowledgement that things will look different because of autism but also an understanding that different is not less. Different is important and valuable. Differences are necessary. Differences are an inherent component to being alive, to living, to being human.

The Road to Acceptance and Action

Accepting autism means taking those reluctant first steps.

Those steps can be taken with uncertainty, with fear, with resistance or grief, with hope, with love, with the whole gamut of emotions along for the ride. Acceptance involves understanding autism as more than a label but a gateway to support and community; an opportunity to educate siblings, family, and community members about autism, inclusion, and neurodiversity.

It can be a call to action — personally, within the walls of a home, and beyond. Several important organizations at the forefront of autism and autism research were started by parents. Parents looking for support, digging for answers, researching effective treatment for their children. Parents who didn’t expect autism. Parents who may have grieved the diagnosis. Parents who fought hard for their child, for change, for growth, for acceptance and advancement.

A diagnosis also allows parents to access effective therapies via private insurance and academic supports from their local school district. Therapy that opens doors, strengthens skills, and decreases the impact maladaptive behaviors like aggression or tantrums may have on an autistic child’s quality of life.

Acceptance fuels action. Action brings answers.

Autistic children will have different needs than neurotypical children. There will be different obstacles to overcome and different battles to be fought. But, in many ways, the journey will be the same. Life will ebb and flow and push and pull parents in a thousand different ways—some of which will not be easy to understand. Questions will always come before there are answers. And, there will always be questions that don’t have answers. There will be ups and downs. There will be periods of high highs and low lows.

But, there will be joy. There will be laughter. There will be love.

Nicole Zahiry, M.A., BCBA, is a behavior analyst specialist in Orange County, California. She has been active in the field of ABA for nearly 20 years. She is also a mother to three children, one of whom was dual diagnosed with ASD and Attention Deficit Hyperactivity Disorder (ADHD) at 5 years old. Nicole is a fierce advocate for neurodivergent inclusion and considers herself an ally of the disabled community.

An Outsider’s Path to Feeling Embraced as a Hispanic-American-Autistic

Dana Trick is on the cusp of the Millennial generation and Gen Z. She feels in between when it comes to a lot of things: being high-functioning and autistic, being white and mixed race, being adult and not-quite-grown-up.

Sometimes, she writes about those worlds colliding. She has written that “the most infuriating and biggest myth surrounding the autism spectrum is that most people believe it only affects Caucasian boys.”

In an essay she penned last year for The Art of Autism, Trick said she doesn’t really like misconceptions she sees as doing more harm than good. She has been on the receiving end of lots of labels herself.

In addition to being autistic, she is a first-generation Mexican-Canadian-American. Her coming of age has meant not only finding a way to manage her autism but also finding a way to feel embraced by her Hispanic heritage.

Finding Her Identity

Autism is under-diagnosed in the Hispanic community. The Centers for Disease Control has identified inequities when it comes to being autistic and Hispanic. Latino families face barriers when it comes to diagnosis and access to healthcare, especially if they are low-income or don’t speak English as their primary language, the CDC says.

Growing up in Moorpark, Calif., Trick did not feel any of those inequities. There was no language barrier or immigration stigma. She was diagnosed on the autism spectrum around the time she started school, just like some of her peers.

“I am mainly white-passing,” she says. “So, I haven’t much received any inequities in my diagnosis and treatment.”

But she has had trouble finding autism representation that reflects her identity. As a teen who loved watching television, the people she saw who were autistic, like the white, male, fictional physicist character Sheldon Cooper on “The Big Bang Theory,” did not look like her.

“I only had a few representations as a Mexican-American and fewer ones that I liked,” Trick says. “Recently, I’ve seen more non-white and female representation of autism, such as Abed from ‘Community’ and Entrapta from ‘She-Ra.’ I feel that my Mexican-American identity and my autistic identity are fighting over each other to be me.”

Adapting to Her Culture

Trick is aware of the realities of being a high-functioning autistic person in her culture. Over the years, she’s learned to adapt.

“Mexican-American family gatherings are always big and chaotic,” she says. “There were a lot of sounds coming from practically everyone in the house. I mostly had to hide in a somewhat quiet room until I was called, or we were leaving.”

As an adult, she tries to interact more with her relatives, though with varying results. When they speak Spanish, she says she feels like “a white friend of the family” who doesn’t understand. When things get too loud, she finds her own happy space.

“I mainly read with headphones on and hear snippets of some conversations and sometimes give my input if they are interesting,” she says. “My relatives know by now that I like routine, and our outings try to be planned and organized to the best they can, but I became more flexible with routine over time as long as they are not sudden.”

Accepting Herself

Trick, who was a history major, loves books, comics, and cultural heritage. In her quiet, introverted way, she says she likes to seek out others who are mixed heritage and autistic, because the support is cathartic.

“I think acceptance of the self is best,” she says. “And learning your heritage and your autistic community and learning how to love and be yourself all the time is the best way to cope.”

 

Dana Trick recently received her associate’s degree in history from California State University. She volunteers at her local library and works part-time at Chumash Indian Museum in Thousand Oaks, Calif. She loves writing poems, short stories, fairytales, and comics about being an outsider to everything. She sometimes writes about autism.

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