Jason Swindle wrote a column in the LaGrange Daily News called Forging a modern day autism warrior. He opens with this quote:
Iron is full of impurities that weaken it; through forging, it becomes steel and is transformed into a razor-sharp sword. Human beings develop in the same fashion — Morihei Ueshiba
The bulk of the article is an extended quote from an autism warrior mom named Jenn Toney. It implies that the “impurity” she forged away was fear of autism. Articles like this are about the personal growth it takes not to reject your own child out of anti-autistic prejudice. Surely that takes growth, but a lot more growth is possible beyond that.
Standards are low, for normal people:
For over three decades, I used the word “normal” to describe people who seemed, well, normal. They spoke normal, walked normal, and did normal things like watch college football on Saturday afternoon. But, I was missing something important and obvious. Normal people do not exist.
While many of us try to conform to how we define normal, the truth is that everyone is very different with their own struggles and gifts. This remains true whether we see it or not.
I use “normal” to mean people like Jason Swindle, who wears a cowboy hat, likes football, and, in white guy fashion, assumes the other Real People are the same. Normal people very much exist. They’re the ones who, like he says, try to conform to some idea of normalcy. It’s an important motivator for them. Group belonging.
What’s amazing is that he could go through life without seeing that people have different strengths and weaknesses, and that that’s ok.
Jenn Toney’s story begins:
Harper was a very active baby. He was able to pick up his head the day after he was born. He was running at nine months. The ultrasound technician even joked around saying, ‘In my 15 years of doing this, he is one of the most active babies I have ever seen. You will have your hands full.’ She was right, I have had my hands full, and I certainly wouldn’t change it for anything.
I was so excited to see him excel so fast. So, it caught me by surprise when he wasn’t speaking when other kids his age were. When my son first started showing signs of autism, I didn’t want to admit he may have it. It was still the ‘A’ word to me. I told myself, ‘He’s a boy. Boys develop slower than girls’ and ‘He will catch on’.
Time passed. My fear grew. My denial became more difficult to maintain.
I’d like to see warrior moms like this say more, a lot more, about what they really thought about autism when they thought it was someone else’s problem. Why is it literally something so scary that one dare not speak its name? Seriously why? Dig deep into that question.
That day, I was presented with two distinct choices. (1) I could ignore the diagnosis, remain in denial, and continue to live in fear, or (2) ask God for the courage to accept the diagnosis and defeat my fear. I chose the second option. I also chose to become a warrior.
Today, Harper has speech and occupational therapy each week. He has an IEP (Individualized Education Program), and we have a routine we follow with him.
I no longer see autism as the ‘A’ word. He sees the world differently than most do, yet he is so sweet and loving. I have seen him do things that I thought were impossible for anyone. For instance, he takes very complicated pieces of machines and equipment apart and puts them back together perfectly. Several people tell him he will make a great engineer.
Interestingly, he has taught me more about life than anyone I have ever met. When he has trouble learning something or gets frustrated, we think ‘outside of the box.’ Thinking outside the box allows us to come up with creative solutions to the problems he faces. This makes it fun and he wants to learn.
I don’t like the warrior metaphor, really. Why is there a fight involved in loving her own child? Is taking him to appointments and stuff a battle? If so, why?
I am his voice. I am his warrior. I am a warrior for others with autism.
Becoming an autism warrior was neither natural nor easy for me. But, God forged this fearful, mother who was in deep denial into a warrior through adversity, courage, and victory.
Harper has become a warrior too.
His autism diagnosis did not defeat either of us. Only fear has been defeated. Harper may not be what society considers ‘normal.’ Actually, he is much more than that. While he battles continued challenges, he also refines the special gifts that few people possess.
Many autistic children, like Harper, bring a wealth of creativity and contributions to our world by thinking outside the box.”
No. Absolutely, definitely not. Do not let this lady put words in the mouths of autistic people. Why should she be the voice of autistic people before consulting the Autistic Self-Advocacy Network? Why are we presumed incompetent to know what’s best for ourselves? Not everyone can speak, but certainly autistic people know more about what it’s like to be autistic than non-autistic relatives.
Today, Jenn serves on the Board of Directors for the West Georgia Autism Foundation. Her position as the Social Media Chairperson has delivered the truth about autism to countless Georgians and people across the country. She has also created mass awareness and is destroying the stigma associated with autism.
Jenn Toney is no longer gripped by fear. She grips the fear of others.
Actually, “autism warrior moms” keep stigma alive by speaking over autistic people. They make themselves sound like martyrs for things that should be expected of all parents, anyway. This article stresses how hard it was for Jenn Toney and how intense the stigma really is (“the A word”). The kid is creative or whatever, but that’s an afterthought and the reader mainly understands that he’s difficult and Other in some way.
“Autism awareness” is a shibboleth for “listens to autism moms instead of autistic people.” Autistic people generally prefer the rhetoric of autism acceptance
Believe me: I would much, much prefer that people have no idea what autism is and let me explain it to them. Right now, the public image of autism created by autism warrior moms makes it harder for autistic people to do things normals take for granted, like dating or having a job. Most problems autistic people face are like that: we have problems due to social discrimination, not anything inherently wrong with autism.