'My Twins Are Autistic, I Was Told my Son Didn't See me as Human'

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The twins were happy babies—they weren't withdrawn in any way.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.

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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. I believe both my sons have apraxia, Jay more severely, but to this day I have not been able to get a diagnosis. There's evidence to suggest apraxia is common among those with autism—but in my view, once your child has been diagnosed with autism, they are sent to what I call "the autism trash pile". This means any issue is linked back to autism and dismissed, regardless of the symptoms or impact on the individual.

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. It's been an amazing experience to have him fully included with his community. This year, for the first time, one of the neighborhood kids came and knocked on the door to ask: "Hey, can Jay come outside and play?" It was lovely to see how happy the kids are to have him there, and to think about how much broader their perspective will be after growing up with him as a friend.

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. Meghan Ashburn is an educational consultant, parent mentor, and co-author of the newly released book, I Will Die On This Hill. Her website, Not An Autism Mom, has resources to help educators and parents support Autistic children inside and outside the classroom. *Names have been changed in this article. All views expressed in this article are the author's own. As told to Newsweek's My Turn associate editor, Monica Greep. Do you have a unique experience or personal story to share? Email the My Turn team at myturn@newsweek.com