Book - ‘I Will Die On This Hill’ Inclusive Perspective

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Meghan Ashburn (Not An Autism Mom) of VA and Jules Edwards (Autistic, Typing) of MN co-authored a book titled I Will Die on This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World, releasing Jan. 19 by Jessica Kingsley Publishing.

Ashburn is a former teacher and works as an educational consultant. Edwards is an Indigenous disability justice advocate and consultant. Edwards is newly appointed to serve on the National Institutes of Health Autism Centers of Excellence advisory board.

This bold new book promises a refreshing look at caring for autistic children, and provides dynamic insights into creating a better world for the estimated 1 in 44 children diagnosed with autism. With a focus on intersectionality, the book features eleven additional Autistic contributors throughout, including nonspeaking/AAC users and BIPOC Autistic advocates from around the world.

"I Will Die On This Hill is such a gift for all of us who have been clueless and way too speculative and assuming about autism," writes Marcie Alvis Walker, creator of Black Coffee with White Friends. "Ashburn and Edwards' honest and unsentimental book will make you a better human being and, therefore, a better neighbor, better educator, better family member to Autistic adults, Autism parents, and the children who need us all to do better."

I Will Die On This Hill challenges the dominant narratives surrounding autism and invites readers to take action.

When my twins, Jay and Nick*, were born in October 2013, they spent six weeks in the neonatal intensive care unit in Virginia where we live. They were six weeks premature and I was instantly thrust into survival mode.

They arrived home in November, but the following month Nick developed respiratory syncytial virus and was sent back to the pediatric intensive care unit for another month.

The situation felt completely unreal, we had three older children and a preemie infant at home while I was going back and forth to the hospital. It was really frightening, because we didn't know if Nick was going to make it.

Fortunately, after returning home the twins were both really healthy. They had no health issues but they were still being checked up on by some of the top doctors in the area, because they were so high-risk.

The twins were happy babies—they weren't withdrawn in any way. The only notable behavior displayed at that age was rocking, which they started doing as soon as they could sit up. They would also love to watch the same television shows on repeat, especially a show called Oscar's Oasis.

As they got a little older we noticed their development seemed delayed, but we expected that because they went through a lot when they were babies. The twins were both walking just fine, and would play together like any other toddlers, but they still weren't talking.

Many parents start signing to their children before their first words, however Jay and Nick didn't seem to pick up on what I was doing; they did not respond or start imitating the things I was doing.

We were in contact with early intervention services shortly after the boys were born, but it wasn't until they turned three, and Jay still wasn't talking, that our pediatrician suggested checking whether they had autism.

Jay's autism diagnosis
Initially, only Jay was diagnosed with autism—but once he was labeled autistic, everything changed. For me, it was like a switch flipped. Beforehand, I felt the focus was supporting the boys mental and emotional health because they were recovering from trauma. But as soon as Jay got the diagnosis, I felt the focus was "fixing" him.

I was shocked at the language used during the process. During the assessment, Jay had grabbed my hand to point something out or help communicate something. The person doing the assessment told me he did this because he viewed me as an inanimate object, like a tool or a machine.

She told me that as part of the testing process, they give children a baby doll and see how they react. My son had never played with a doll, because he's grown up in a house full of other boys, so likely he just didn't know what to do with it.

However the assessor told me the reason he didn't feed the doll was because he didn't care about the doll's feelings—because he didn't have any empathy. I was told my son had avoidant behaviors which could be corrected in Applied Behavior Analysis (ABA) therapy.

Looking back now, it feels like a dream. This professional was so confident and assured in what she was saying, I almost stopped trusting myself and my parental instincts, that my son does have empathy but just communicates in a different way. It was really surreal.

After the assessment, we returned to the pediatrician who just handed us a list of ABA providers, but I didn't feel like my son needed to be "fixed." I was left with this feeling of confusion. I felt as though because of the diagnosis, anything my son would go through in the future would be ignored and lumped in with his autism.

Nick's misdiagnosis
Around the same time, Nick was misdiagnosed. I can't recall the specific condition, but they said he has an IQ of 58—which we have since discovered is absolutely untrue. During the assessment process, a member of staff used an incredibly derogatory term to describe what they thought Nick had.

I was astonished. I sat there thinking: I am an educated white woman, if I am receiving this type of language and this sort of misinformation, what about those who don't have that type of privilege I do and may have to go off what the doctors are telling them.

I was convinced that both my sons had autism, they were twins and both displayed similar behaviors, but this developmental psychologist was telling me there were no signs of autism—because Nick could look me in the eyes and smile at me. It took around a year for him to eventually be diagnosed with autism, but it took months and months of me researching online and going back to the doctors.

Even after the diagnosis, I would find articles about apraxia and dyspraxia, both of which are conditions which affect physical movement and which my sons were showing signs of, which my sons were showing signs of, and take them to doctors to ask what our options were. Every time I felt like I was dismissed.

Finding the online community
After my sons were diagnosed with autism it took me around a year to find the autistic community online. I was never told by anyone that I could reach out to this huge support network on social media.

Soon I started learning from autistic people, and from non-speaking autistic people. I learned more about apraxia, a neurological condition which affects physical movement or speech, and I came to believe that autism should not be labeled as a "behavioral diagnosis."

From the age of four, Jay began communicating using a speech generating app, however without the online community, I never would have learned about these types of communication devices.

Fighting for my sons' education
As soon as my sons hit kindergarten, because Jay was not talking, he was separated from the general population of kids. At this point, my boys were identical, they were exhibiting the same level of intelligence, but Jay wasn't speaking.

Jay was placed in a special education setting. I was told the general education system did not have the adequate tools to support him, but I don't feel separating my son from his peers benefited him in any way.

For his first full year of school Jay was in a special education class. It was only due to constant campaigning on my part that he was eventually able to integrate into mainstream education permanently.

I have learned so much from the non-speaking community about how people often presume incompetence among autistic people, and have wrapped my own head around that so that I can support Jay's teachers and make sure he has access to everything he needs.

Misconceptions about autism
My son does not see me as an object and does feel empathy. I believe the biggest misconception about children with autism is that they're broken—that there is something that needs to be fixed or changed. Rocking and spinning are not bad behaviors, they're ways autistic children cope and regulate themselves. They're giving themselves strategies to exist in a world built for neurotypical people.

For me, the other biggest fallacy is that autism is a crisis. Yes, I feel early intervention can be great and I am a huge supporter of the program when it comes to physical issues.

However when it comes to autism, I believe early intervention can cause a sense of urgency that does not have to exist, because being autistic is not an emergency.