April 2012: Cause Warrior Allison Johnson
I don’t know April’s cause warrior as well as previous warriors, but she’s in my Get Born club and that gets her in many doors in my heart. Allison is a cause warrior for autism, and as April is Autism Awareness Month, and as Allison was doing a big event at the beginning of April she was the perfect choice. So, here is our interview:
Amanda: Please tell us how and when autism became part of your life.
Allison: My son was diagnosed with Asperger’s a week shy of his fifth birthday after over two years of searching for answers. It’s a common story with lots of wrong turns, and we were sent home from Denver’s Children’s Hospital with a “good luck with that” sort of attitude. Here in the mountains [Allison lives in the Central Rocky Mountains], we had no resources, no guidance, and no idea what to do next.
Amanda: When and why did you transition from being an individual caregiver of a child with Asperger’s to being that AND a Cause Warrior for all autistic children and their families and where has that transition and journey brought you?
Allison: I’m not sure I’d consider myself a warrior. The word warrior implies being a combatant of some sort, and what I do is almost exactly the opposite. I encourage education and compassion and connection.
My transition to founding the Roaring Fork Autism Network was almost immediate. I didn’t want other parents to face the fear and loneliness and lack of guidance that I did in those first few months. Since then, the Roaring Fork Autism Network has grown to serve over 80 families and 200 educators and professionals in the region. We also just lit part of Aspen Mountain blue to kick off Autism Awareness Month! That was very exciting.
Amanda: Who are some of your role models both autism advocates and other cause warriors?
Allison: My role models are those who can talk about autism and disability with real knowledge and hope and compassion. Diane Osaki, OTR, Dr. Anne Moll of Colorado Mountain College and Dr. Susan Hepburn of JFK Partners exemplify this gift, as does Anne Dunlevie, who runs a marvelous organization for gifted children in Eagle County (GET).
Each of them has taught me about patience and wisdom and parenting in ways that I couldn’t have discovered on my own. In the wider field, I also love Temple Grandin and John Elder Robison for the insight they provide into what it means to be on the spectrum.
Amanda: Many diverse causes often have the same needs (research dollars, awareness, services, etc.). What do you think are the highest priority needs of the Autism community and why?
Too much time and money has been spent on finding a “cure” or a single cause of autism. Some of this research is necessary, but not at the expense of children who have already been diagnosed and are underserved. The highest priority for me is education, whether that means a parent who needs to learn how to advocate effectively or a general education teacher teaching a child on the spectrum for the first time.
For Light It Up Blue Aspen, we had two celebrity fathers speak at local high schools. One asked the students how many knew a person with autism. Nearly all of the students raised their hand. When asked how many understood what autism was, less than ten raised their hand. To me, that shows the level of work that still needs to be done.
Adults, families, and children all urgently need more support as well. Recent studies have shown that moms with kids on the spectrum have the same level of stress as combat soldiers and earn 56% less than moms of typical children. And the cost of autism has almost tripled to $126 billion a year in the U.S. Our children need more consistent wraparound care, our schools need more resources and autism education, and parents and adults on the spectrum need more support as well.
Amanda: Every cause has some division, whether it’s dissension about the direction of a cause or its image or a split based on personal beliefs. I’ve written about this rift in the CHD world and we’ve seen it in the Breast Cancer advocacy space as well. With Autism, the vaccine issue is just one of the more exposed conflicts. All that aside, what is the common ground where all Autism advocates agree and are able to advance the cause?
I think we’d all agree that there needs to be greater education and understanding of what autism looks like (and how it’s different in each person, as well), better respite for parents, and more access to critical supports and interventions from preschool on up through the work world.
Amanda: As a mom and a Cause Warrior, what do you wish people like me, who don’t know much about Autism and don’t face it everyday, knew about your cause and your needs?
Autism is first and foremost a spectrum. All of those on it have the ability to learn and grow and love and lead productive lives, but they also have significant deficits that can profoundly impact their lives, regardless of whether they’re intellectually disabled or highly gifted.
I read a blog recently where the writer called autism an “issue.” Autism is not an issue. It’s a neurobiological disorder that requires diagnosis and effective treatment. It’s often called a communication disorder, but it’s so much more than a lack of social skills. People on the spectrum also struggle with countless diverse issues like executive function, memory, balance and motor skills, flexibility and change, gastro-intestinal and medical problems, sensory overload, extreme anxiety, and a lack of peer support and friendship. Contrary to popular misconceptions, people on the spectrum also have a great capacity to love and feel emotion—in fact I’d say they sometimes feel emotions harder and deeper than most typical people.
Awareness of autism is more common nowadays, but true understanding and acceptance are not. Children with autism are bullied three times more than the average child. With 1 in 88 children diagnosed today (1 in 54 boys), autism reaches into every community, school, and neighborhood. Many of these children and adults have so much potential and brilliant minds—they could be the ones making the greatest leaps forward in technology, science, and the arts in the years to come. It behooves us to pay attention and get all of them the support they need to succeed. My son could change the world if he’s given the chance, but to do so sometimes requires others to stop and make the effort to see the world through his eyes.
Amanda: What can everyday people who mean well but don’t have a lot of financial means do to be supportive of the Autism community?
Thank you for asking that thoughtful question. We often say that the educational strategies which help kids on the spectrum also help all kids. The same is true of supporting those in the autism community. We have become a very judgmental, polemic society, and the most supportive thing we can do is examine our own behavior and biases. Everyone has struggles and differences and strengths and weaknesses, and by accepting this basic truth, we can be more accepting of diversity in general.
Also, if you know a family, a child, or an adult on the spectrum, make the effort to engage and understand what their lives are like. Bring a lasagna to a neighbor who looks like she’s had a rough day. If you’re a parent, encourage play dates with a child on the spectrum. That child can teach your own as much about compassion (and legos and trains and ceiling fans) as your child can provide desperately needed socialization opportunities for that child. Autism is isolating and exhausting for families who often feel shut out of typical life experiences, and so just being open and friendly and inclusive can go a long way.
Amanda: Is there anything else you want us to know?
I could go on for days! Thank you for the opportunity to talk about autism this month. All are welcome to visit www.rfautism.org for more information and I’m always happy to talk to people through firstname.lastname@example.org.
Many thanks to Allison for this informative and insightful interview, to the people who’ve supported her efforts, and to the photographers who let us use pictures from this important event (noted in the captions). Please consider how you might make life more open and welcoming to all families facing autism or other disorders. No one wants to feel isolated or excluded from the joys of everyday life. Please enjoy the slide show of her activities to Light Up Aspen in Blue for Autism this April.