My best friend for many years is a psychologist. When I told him that my son was referred for autism screening—and I’ll never forget this—he said, “I’m so sorry.” His reaction shocked me.
I asked, “Why?”
He said, “That he might be disabled.”
You can imagine I don’t speak to him much anymore. I felt rage and disgust that someone I trusted, someone in a position to know better, would react so appallingly to the news that my son—like myself, like my mother, like my brother—is likely autistic.
Look, I realize that learning your child has autism can be terrifying for Neurotypical parents. I’m not trying to discredit your feelings when I share how hurt I was by this one person’s reaction. It can be overwhelming, especially if your child will require more assistance than myself or my son need, but in this space I will try to enlighten Neurodivergent and Neurotypical people alike about the damage of ableism, as well as shine light on ableist microaggressions.
Saying, “I’m so sorry” when a friend excitedly announces their child is the same as they are… well, read the room.
Every neurodivergent individual will need their own team of support and toolbox of strategies. Some individuals will look and act fairly normal by the time they’re adults. Some will continue to struggle with speech/language needing tools for communication well into their last years of life. Not knowing if your child will “grow out of it” or lead the life you imagined for them can cause pain and guilt, and even resentment. (Side Note: Autistic people don’t “grow out of it”, they simply develop adapted behaviors that reduce the negative impacts of normal people pointing out or being offended by how different the autistic person is. That is called masking)
Honestly, I think I’m on a bit of a rant/tangent here. Jamie is such a special kid. I know he’s my kid, so I’m heavily biased, but he’s smart and funny and kind and thoughtful and creative and I just adore seeing how his autistic brain works. And I love reflecting on my own childhood, my own brain, when I see how similar we are. For me, that’s healing.
Let’s get back on track. I want to talk about what autism is and what it isn’t. To do this I’m going to start with a bit of a history lesson and timeline. Autism was first noticed and named 110 years ago by a swiss psychiatrist named Paul Eugen Bleuler who came up with the term to describe what we now identify as a pediatric schizophrenic patient. In the next 30 years, several independent psychiatrists in Europe went on to study their own groups of “abnormal” children, mostly male, describing traits and behaviors and associating these to new conditions. Autism, Asperger Syndrome, Childhood Schizophrenia, and Pervasive Developmental Disorder. Along the same timeline and after the 1918 influenza pandemic, many other psychiatrists began to recognize different developmental symptoms among pediatric males that became known as Attention Deficit Disorder.
By the mid 1950s, the first Diagnostic and Statistical Manual of Mental Disorders (DSM) was readily available, and psychiatrists throughout the western world began identifying children (mostly boys, based on the very limited research of some sketchy first observers) with severe symptoms of what they called autism, schizophrenia, and ADD.
So if you think about the above two paragraphs so far, we’re looking back 70 years at this point and these conditions are just now being clinically diagnosed in their most severe presentations.
In the late 1970s and early 1980s, Hans Asperger’s research on what was then considered “less severe forms of autism” was translated into English and popularized in North America. Children—again, mostly boys as the research was conducted on boys and the assumption was these conditions don’t effect girls—started to be diagnosed with Asperger Syndrome.
By the late 1990s and early 2000s, Temple Grandin’s books change the narrative on autism. So here let’s pause and reflect that we’re talking about JUST 20 years ago. Temple Grandin wrote about her own experience as an autistic girl. She wrote about the way autistic people think, how their thought patterns reflect animals, and changed the language we use by referring to autistic people in more humane, more accepting terms. She also opened the door to a (revolutionary at the time) new understanding that girls and women could be autistic, too.
This was also the emergence of Anti-Vaccine rhetoric and fear mongering all related to the threat that childhood vaccination schedules, namely the MMR, would cause your child to become autistic. This is horse shit. Anyway.
Prior to the early 2000s, representation of autism in media and film displayed heavily gifted but extremely mentally disabled men. By this point in the timeline, more male characters who are quirky, rigid, sometimes asexual scientists that are socially maladapted become popularized. Think of Sheldon from The Big Bang Theory. And in 2013, the latest Diagnostic & Statistical Manual (DSM-5) combines all the known childhood developmental disorders into what we now call Autism Spectrum Disorder, and finally opens diagnostic criteria to include girls.
TLDR: Autism and ADD/ADHD were only first recognized about 100 years ago. Generally, mental health and psychiatry is about the same age. That’s only 3 generations from first observation to what we currently know. There’s buttloads left to categorize and even more to develop in terms of assistance and treatment. So what we know is limited and what we don’t know is vast.
Where does that leave us in terms of what autism is? Well, we consider it a childhood developmental disorder. This is to say symptoms are present in childhood, and children with ASD develop differently than children who don’t have ASD. This could mean speech/language delays, gross motor delays, fine motor delays, or delays in social development. Example: My son has trouble saying works correctly and sometimes speaks with a stutter. He didn’t begin speaking until much later than would be consider developmentally normal. He learned to walk later than normal and struggles with eye contact and age-appropriate empathy.
With love, attention, and patience from a child’s support group, autistic children can and do learn to adapt to our society. They learn to regulate their disadvantages, develop coping practices like stimming (self-stimulation for emotional and physical regulation), and find suitable environments to thrive. It won’t be perfect or void of struggles, as I know all too well myself, but show me a neurotypical person who doesn’t also have to cope and struggle with their life.
I just realized I started on a third page, so I’ll save more for next time. Love you all. Thanks for being here with me, and for your interest in autistic makers.
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Thank you for opening yourself up this way. I look forward to what you choose to share going forward.