I’m pretty new to the autism world, but I’ve had an experience similar to one Angelique describes in this post. It’s hard for me to take the perspective of parents who see their child as “far from the tree.”
For us to accept our son’s diagnosis we had to self-pathologize — we had to learn that others consider certain traits we have and that we love about our son a medical issue. For parents who don’t go through that journey, the medicalization of autism may never be questioned; it’s framed to them as a disease and a problem, and they internalize this framing. As Angelique says about this other parent, “she wants to do what is best for her child, but has been cocooned in the medical world.”
I’m tempted to put in tons of nuances and disclaimers here, but let me start with one. I’m not saying there’s no problem.
I was a child who didn’t talk to the other preschoolers, would go on and on about special interests in “little professor” mode, and all the rest. I was bullied and had no friends, and it was a problem which made me miserable at the time. I would have benefited from help. At the same time, my parents had an exclusively positive perspective on these traits. Intelligence, independence from the crowd, digging deeply into interests, these are all good things. They fought for me to have a better situation at school and when my traits were problematic they blamed others for their inability to adapt and understand. They found countless opportunities for me to build on my strengths, and I did.
Verbal, high-IQ autism did not exist in the minds of doctors and educators when I was a kid, of course, so there was no risk of a label and it didn’t enter anyone’s mind.
So with our son there’s a very difficult process of keeping two things in mind at the same time.
- First that he does need individualized education, recognizing that he learns systemizable information (such as how to read) almost instantly but has to be explicitly taught how to play with other kids. And the only way to get that education, right now, is through an essentially medical process of diagnosis and insurance filings.
- Second that he is just fine, awesome, and not “broken” or “diseased.”
The human mind has a lot of trouble with this kind of thing. If we use a conceptual framework such as “diagnosis” and “disease,” then our brain automatically and without conscious decision pulls in a bunch of implications that go with that framework. For autism and disease, many of these implications are wrong:
- that the condition is unequivocally “bad”
- that there’s a cure
- that the cure is “medical” in nature (drugs, diet, etc.)
- that the condition is binary (have it or don’t) rather than dimensional (have a degree of it)
- that working with a person is “therapy” rather than “education”
- that it’s a single condition rather than a trait or symptom (with many causes)
It’s sort of like saying that variation in personality or in IQ counts as a disease; those things may be related to some diseases, and they may create problems that make people unhappy, but they are not by themselves diseases. They are traits.
Right now we have health insurance paying for our son to practice pretend play, conversation, etc. for hours every day, and it’s making a huge difference for him — what could be better than seeing him have a ton of fun running around the house with a friend? We finally had a chance to see that the other day.
I’m grateful that the world considers autism a medical problem in that it gets him this education he needs. However, in my mind this is a fiction to get services, only needed because our educational system sucks at individualization.
I think it took me until middle school or so to even notice that I didn’t have any friends, so I missed years of opportunity to practice social skills. That’s why we’re pushing my son to work hard and learn skills he doesn’t naturally go for. Soon, though, I think we have to switch to emphasizing his strengths; nobody succeeds on the basis of mitigating weaknesses. It’s very hard to think about this… I’m not sure how to balance helping him avoid some of my own struggles, while helping him appreciate his own strengths.
Let me mention another disclaimer. There’s plenty of evidence that some autisms co-occur with or share a cause with truly medical issues: seizures, tuberous sclerosis, or perhaps many others — the research is not there yet. Many children with autism have medical issues which may share a root cause with autism, or may cause them discomfort contributing to problematic behavior.
I do, however, strongly question that the autism diagnostic criteria by themselves are a disease; plenty of adults who meet those criteria have been very happy and have made huge contributions to society, especially in intellectual fields, not in spite of but rather because of autistic traits.
That’s why I feel bad meeting parents who are confused and sad about their child, perhaps looking for a magic pill or diet, when their child’s traits may be more like a quirky personality than a disease, and their child may have many strengths to build on. I don’t quite know what to say. I’m not angry at them; it’s very hard to be a parent. Some of them may also be quite right that their child has an underlying medical problem, and of course some children will be significantly disabled for life. But it isn’t true just because of an autism diagnosis. We have to know our individual children.
Often I want to find a way to tell someone, without making them defensive, that I know lots of people with autistic traits who are very happy and successful. That I was a kid who didn’t really ever have proper friends in school, but it’s OK. That they don’t have to feel quite so bad. But of course I’m not very good at delicate conversations like that!