April is Autism Awareness Acceptance month! Though we are all pretty aware of autism now. Most #actuallyautistic people are now pushing for autism acceptance over awareness. It’s the end of the month so I will leave that discussion for the more informed autistic voices who have already voiced this perspective. Please check out this article from Forbes. It does a great job of explaining the perspective of acceptance over awareness and offers information and links to help understand what autistic people experience.
It was completely by accident that we scheduled autism evaluations for our kids this month.
When our son was diagnosed with ADHD last November It triggered in me the drive to actually understand what it was. Even though I’ve always been aware of it I was woefully uninformed about it. Learning about ADHD led me to Neurodivergence, which led me to Autism. I have done a lot of research on all of this already, and I feel like I have barely scratched the surface. The more I’ve learned about neurodivergence the more I recognize these traits in me and my family. When I say family I mean everyone, not just my husband and children, but also in my parents, my extended family, and also in the family I married into. It is definitely weird to finally recognize something that has always been there.
I have family members that are diagnosed with ADHD and Autism. Learning about the genetic component of both prompted me to finally seek answers to why my children feel more deeply, and react more strongly than other kids. I shared earlier that all four of us, myself, my husband, and both my children have all been diagnosed with ADHD. But I felt that there was something more. No doctor or family member has ever suggested that my kids were different. When I voiced my concerns about my son I heard from family “He’s fine, don’t worry about it. He’s just fine.” And yes, my son is just fine, and so is my daughter. But what if they aren’t fine later on? What if they need more help than we’re aware of?
This month we learned that both of our children are autistic. I was right.
I’ve also been noticing the similarities between the challenges my children are facing and what myself and my siblings faced in our youth. One of my siblings has been diagnosed as autistic, and I wouldn’t be surprised if the other does as well. If I have a sibling and cousins with diagnosed autism, if there is a genetic component to autism, what does that mean for me?
I have gone through every available screening test and questionnaire that I can find. These are tools developed by clinicians to help determine if an adult or child meets the criteria for autism. Every. Single. One. came back as meeting the criteria for a diagnosis of autism. Every one. I even took a couple twice to be sure. I had never considered autism for myself, but I have always felt different. I’ve just chalked it up to my challenging childhood, or my atypical life.
So what is one supposed to do with this information? I do have an upcoming autism evaluation. It is a total of four appointments totaling 10 hours, and it will cost me $2,700 out of pocket, as it is not covered by insurance. In contrast, my kid’s evaluations were about three hours and we only had to pay the copay.
Because of the high cost of adult autistic evaluations a self diagnosis is widely accepted in the autistic community. Some people simply cannot afford to get an evaluation. The research on autism is also rapidly improving so many providers have an outdated understanding of autism. There is also significant stigma and rampant misinformation in the lay population. Why would people be willing to pay so much money for an evaluation, or self diagnose themselves as autistic? Because we finally have a reason for why we feel different. We can begin to recognize and celebrate what makes us unique. We can shed these masks we’ve been using, sometimes not very effectively, to try and fit into society. We can forgive ourselves of the shame or guilt we feel for not living as the world expects. We can finally feel that sense of belonging that has been missing.
While I do not yet have a diagnosis, I now identify as an autistic person. I will still pay thousands to get a diagnosis because it may help me later in life. A diagnosis may even hurt me down the road too. I will likely receive push-back from people until then. But I feel like I am finally understanding myself. And isn’t that the most important thing in life? Feeling comfortable and confident in our own skin? Understanding who I am, and how my autistic brain works will help me be a better mother to my autistic children as well.
I am autistic. My children are autistic. And I wouldn’t change that at all.
I wasn’t sure if I should publicly share this information. Heck I’m still processing what this all means and what I’m supposed to do next. But I’ve been made aware of the shift happening in the autistic community. Autism is nothing to be ashamed of. It is not a disease to be cured. Autistic people are not less than. We are just living in a world not built for us. Autistic people deserve the same respect and equity that everyone else has had the luxury of living with. If I can participate in and help move this shift towards acceptance, why in the world would I keep quiet?
“Autism cannot be separated from the Autist, it is a major part of a person’s identity and treating it like a problem to be solved is demeaning. Awareness is not enough and acceptance is the conversation we need to be having.”
