Disclaimer: I am not a scientist. These are my own views, based upon my own research and perceptions. The analogy I discuss below is one I shared with a dear friend of mine – who happens to be a doctor – and she thought it was a good one. This is merely my way of attempting to convey the complexity of autism to lay persons. If you want science, there are far more qualified persons than me to consult. The Thinking Person’s Guide to Autism is a great place to start. Those ladies are way smarter than me and speak the language of science. And The Autism Science Foundation won’t lead you astray.
The other night, an individual (I’ll allow to remain nameless) called to tell me all about how she met a woman with a grown autistic son who was doing so well that he is able to drive to the grocery store. She thought that perhaps I might want to meet said woman and see if the woman might have any “tips” or advice to offer me. It was obvious to me that she thinks my son hasn’t made sufficient progress (him being three, not toilet trained, and using just a few words) and that I could use some help. I ask for help frequently from parents of other autistic kids, but I resented the implication from this person that this other mother was the “success story” I could emulate – if only I were willing.
Being of the sort who tries to articulate my thoughts, I attempted to explain why I wasn’t interested in all of her recent -and frequent -suggestions. I tried to convey to her how many suggestions, cures, and treatments people have pitched to me. I tried to explain why we decided to end biomedical treatment. (It wasn’t working, and my views of my son’s autism and autism in general have changed.) I tried to tell her that I have reached a point where – though I do believe in the benefits and necessity of speech, OT, and PT and do research other promising and tested new therapies – I have accepted that Callum is mostly going to be who he is already wired to be. And that he is simply too young to assess how his individual brain wiring is going to affect his future. It’s trite, but – in the end – time will tell.
All I got on the other end of the line was…silence. The unmistakable indictment in silence. I grew frustrated and began babbling about how I wasn’t really getting across what I meant. Eventually, both of us tired of the awkward conversation and hung up. I walked away unsettled. Defensive. Wanting to cry. Knowing exactly what she was thinking. She’s given up on her child. She’s not going to try to keep helping him. She’s a terrible mother, and he’ll never talk or have a normal life because of her.
I’ve seen it in her eyes the few times I’ve seen her since then. And, despite still believing what I said, I am haunted by her disapproval and my own self-doubt.
There is a saying in the autism world – “If you’ve met a child with autism, you’ve met one child with autism.” On the surface, it’s meaning is obvious. Of course every child is different, right? Most people would nod their heads emphatically at that statement — autism or no.
But that statement means so much more than that.
What everyday people who don’t deal with autism in their everyday lives think about autism, they think about it much like diseases of the body. Diabetes. Coronary Artery Disease. Lupus. Conditions that can be tested for definitively and carry a consistent course of treatment. There are causes that can be identified, and symptoms that can be controlled via medications.
But what everyday people do not understand about autism is that those who have it aren’t at all like those who have specific physical diseases. There isn’t a typical progression of symptoms leading to the worst case scenario. Finding the cause of autism is comparable to finding the cause of cancer. Likewise, finding a “treatment” for it is equally daunting. Why? Because there is no such thing as plain old cancer. Cancer is a vast array of diseases with a vast array of prognoses. Just because you’ve been diagnosed with cancer – it does not mean that your chances of survival are the same as your neighbor’s. Thyroid cancer is a heck of a lot better news than pancreatic cancer. Ovarian much more devastating than minor skin cancer. And those cancers still are comprised of different types. Yet, we call them all cancer, right?
Autism is just like that. But it, like cancer, cannot be nailed down in terms of cause or even treatment. A breast cancer victim will not be cured by removal of her prostate, now will she? And the cellular events leading to her cancer are likely very different from the causes of the prostate cancer patient’s.
What I’m trying to say is autism is not really one disorder. That’s why its called autism spectrum disorder. It is a description of a variety of similar traits — of highly divergent degrees of severity. Some children with autism aren’t impacted with speech difficulties. And some children will never speak. Some will excel academically and earn graduate degrees. Some will never learn to read. Some autistic adults grow up to marry and have children. Some cannot tolerate the touch of another human being. They are not the same people, and they do not have the same disorder. It just carries the same umbrella term. What created the differences in the brain wiring of one individual on the spectrum did not necessarily create the differences in another. The reason there isn’t a definitive “cause” of autism is because it likely doesn’t exist. There are genetic links. There are suggestions of environmental factors. Prematurity increases risk. Some forms may be merely a natural variation in the human spectrum. The causes appear to be many. Therefore, the effects are many as well. Which means that what will help one autistic person isn’t necessarily going to help another. And some on the spectrum don’t need our “help” at all.
It is not the fault of their parents for what they did or did not do in terms of doctors chosen or treatments attempted. One child’s autism is not another’s. No more than one person’s cancer is another’s. So calling up the parents of an autistic child and telling them all about what “fixed” another person’s child or comparing autistic children to one another is an exercise in futility – and cruelty. Would you call a lung cancer patient and berate her that she isn’t doing as well as your neighbor who had that spot of skin cancer removed from her nose? I think not. But people do it all the time to us.
Our children are individuals with individual differences. And assuming that a severely autistic child will do just as well as a mildly autistic/Asperger’s child using the same interventions is a cruel misconception. Why? Because it automatically points a finger toward his parents, his school, his therapists. And it suggests that the child may not have fulfilled his own potential. This is not to say that parents should just give up and allow nature to take its course. Yes, there are interventions that can greatly help children across the autism spectrum. But I believe that we must consider the starting point of each child before setting our goals. If goals are reached, then you set another one. Sometimes amazing things happen that way and children seemingly without hope reach unpredicted milestones. But the harsh reality is that some autistic children’s wiring is so severely impacted that they will never function independently. And it isn’t pessimistic; it’s realistic. It is accepting the child for who he is while working to help him be the best him he can be.
So, friends and family, acquaintances and strangers, I respectfully ask that you back off. You might not know what you’re talking about. You mean well, we know. But we already have our hands full trying to maximize the potential for happiness – in whatever form it comes – in our children. We don’t need amateur neurologists theorizing what we could be doing differently. It’s insulting. It’s frustrating. It hurts. If you want to help, how about calling and saying, “I know you’ve got your hands full. Do you have a project around the house you think I could help with for an hour or two? Do you need an hour or two to yourself? Do you need me to run an errand? Or take Susie to dance class, etc.?”
That’s the kind help we really need.