"But, *my* child does suffer from autism...."
Being in the autism community for over 10 years I have heard this sentence a lot. Every so often a parent of an autistic child will proclaim that their child really does indeed suffer from the condition of autism. Sometimes they'll remark how it isn't a gift for some people, like their child. they add, giving adult autistic advocates the side eye. They feel bold, like they just said something that was important. An untold truth, if you will. This remark will often beget throes of relieved parents chiming in with the 'me toos'. The numbers may speak of solidarity on the side of parents, but the sound of silence on the child's part is deafening to me. I want to explore this silence.
Setting aside the whole issue of what suffering is, or how it comes about, I want to first delve into who speaks for who. I always feel this uncomfortable feeling that balls itself into a small tense knot below my stomach when I hear parents recount how their child suffers from autism. They cite the struggles, and the hardships, and it would seem to anyone listening that there is indeed a lot of hardship happening in the situations the parents recount from their point of view. When I hear these stories the uncomfortable feelings I have are in large part because I can't help but think of how undignified it would be to have your parent recounting all of your weaknesses, and most vulnerable moments to an entire internet audience for no other reason than to prove their point.
But, most of all what I hear is when all these points of "suffering" is made is, "This is how hard it is for me to care for you." It's not about the child's suffering much at all, but the parent's suffering, and the perceived suffering on the part of the child that they overlay onto the situation on behalf of the their children. Often they are not understanding of the needs of their children, which is not necessarily their fault. Their minds, and bodies work differently than their child's. They can't always know how to accommodate their children. I find all of that to be understandable.
What I don't often understand is why, after diagnosis, and knowing that your child's whole physical being, and inner world work differently than yours do you not adjust your expectations accordingly. Not lower, just different. When you see that your child is flailing, and things keep going badly why then do you place the blame on the child (or their autism), and not reevaluate the situations in which precipitated the events, and your expectations of what is happening? There really isn't any way for you to claim that autism is what made them do x, or y. Being autistic is part of who they are. It's not a removable trait. It's literally like the OS of a person. Most are Windows, but some of us are Macs. We still can oftentimes do the same operations, but it's gonna run in different ways, and if you keep trying to plug in software that doesn't fit the configuration of the OS you need to understand you're the one crashing the system.
This is where autistic adults come in. We offer advice, and explain how things can be done differently to parents asking for solutions on the internet. I find that probably 70% of the time that advice is dismissed. Not only is it dismissed, but it's done so angrily. Parents will angrily reply that we don't know how the world works, and that we're just basically ignorant, and unqualified to speak about parenting. Ironically, it's them who doesn't understand how the world works, feels, and operates from inside an autistic brain, but they're determined to squish their child into the NT world no matter the cost. And that does cause suffering. A lot of it.
That's not to say that we don't suffer at all. Most everyone struggles. Granted some of us way more than others, but no one owns the corner on pain, and suffering. Some of the best minds contend with demons of the worst sort. Sometimes these minds create the art, poetry, music, books, films, and even inventions that move the world. When harnessed, and driven in the best environment we can flourish with our strengths. When drowning in our struggles we can feel hopeless, and seem even more so by outsiders. More often than not, what I see when looking at the autistic population as a whole is a group of people who suffer from lack of accommodations, and understanding from the world. It's not the autism that feels so limiting, but the world as a whole to meet our needs, and let us be as we are. With the right support and understanding much suffering can be alleviated, even if our lives look very different than what most would think as happy, or successful. Every being has talent, skills, and value to add to the world. Look for that in ways that can't be measured by money, or social status, and it will make everyone's quality of life better.