Tag Archives: Disorders

Autism as a “neurobiological” condition

Humans are neurobiological creatures. We are “made out of meat” as Terry Bisson so memorably put it. Our moods and cognitive capabilities have everything to do with hunger, fatigue, headaches, sore backs, hormones, and other influences outside the brain; not to mention the many biases inherent in our how our brains work.

Yet we often say that autism, depression, ADHD, and other diagnoses are neurological or neurobiological. When we use this word, what are we distinguishing these conditions from?

What is an example of a non-neurobiological mental difference, personality trait, or even learned idea or learned behavior? I can’t think of one. The word has no sensible opposite in this context.

When you hear someone say “autism is a neurobiological disorder” they’re sometimes saying the autistic person “can’t help it” and needs to be cut some slack. People want to switch from judgment to empathy, a noble goal.

But with this word “neuro(bio)logical” we’re implying that its opposite exists… that non-autistic minds might be non-neurobiological, or perhaps that the autistic mind has an outside or uncontrollable force operating upon it. We’re implying that autism (neurobiological) is something separate from the (non-neurobiological) self.

This is dehumanizing at worst, and misleading at best. It’s both immoral and impractical.

When we say someone has a “neurobiological” difference, and therefore should be cut some slack, are we saying they are meat-automata lacking some element of free will which other people have?

As is so often the case, we might correct how we think about autism by finding a new habit of thought which leads us to right action by recognizing the common humanity (sameness, rather than otherness) of an autistic person.

What does that look like? From a practical perspective, many wise teachers from Jesus to Thich Nhat Hanh have already shown us how to forgive and empathize, without resorting to psychiatric diagnosis.

I won’t try to restate the words of these teachers — please learn from them directly! — but I hope to convince you to question the “neurobiological excuse” model in your relationships, and urge you to look elsewhere, wherever that may be.

Forgiving ourselves without psychiatric approval

Many accounts of adult autism diagnosis describe a feeling of relief. People say they felt terrible about themselves.  The autism diagnosis gave them an explanation, and permission to shift blame to neurobiology. They could finally forgive themselves.

But they couldn’t forgive themselves before. They required a medical excuse before it was OK to be the person that they are. While it’s wonderful that diagnosis was helpful, it’s horrible that the help was needed.

DSM diagnoses aren’t even intended to be explanations; they’re intended to be descriptions. An autism diagnosis means “you are like other Autistic people,” it does not mean “we know why Autistic people are like that.”

If your flaws aren’t found in the DSM, must you hate yourself?

Let’s find a better way of thinking about relationships

In a touching letter to her husband, an anonymous wife describes how her feelings for her husband changed when he was diagnosed with autism. She found his behavior saddening and frustrating. She felt he wasn’t making an effort. With the autism diagnosis, this changed; she reframed how she thought about her husband and was able to forgive him.

For me, a workable model for living with others doesn’t fit the “before” or the “after” in this letter.

Before diagnosis, it was not realistic to expect a spouse to change dramatically; people do not, as a rule, change dramatically. It doesn’t matter whether there’s a DSM category for the way someone is; they are still that way.

After diagnosis, if these spouses weren’t a good match, they still are not (whether or not it’s anyone’s “fault”). If forgiveness was the only missing element, then wonderful! But again, why the need for diagnosis to forgive?

What’s needed is a model which works both before and after; which allows us to empathize and forgive, and to recognize our own needs, and to expect others to be responsible for their actions; and which allows those things without reference to psychiatric diagnosis, simply recognizing that we all are who we are.

The same need for a better model arises in parent-child relationships.

A related conversation: sexual orientation

There’s a parallel discussion about sexual orientation. Can someone change their sexual orientation and become “ex-gay”? Reasonable people don’t think so. Does this mean sexual orientation is neurobiological? Does it mean it’s genetic? Does it mean it’s learned at an early age? Does it matter?

When we debate “choice” in sexual orientation, we’re already framing the discussion in a dehumanizing way. If it’s not a choice, then someone can claim that it’s a disorder, that it would be appropriately “cured” or eliminated through eugenics. If it is a choice, then someone can claim that it’s OK to discriminate and persecute, because people can “help it.”

For me the human perspective is that it doesn’t matter whether it’s a choice. People experience sexual orientation as a core element of their identity; it’s clear that attacking someone’s sexual orientation harms that person. We should not go around harming people without a good reason, and as so many courts have eloquently explained in same-sex marriage cases, no good reason exists here.

We cannot be humane toward someone if our attitude is that they need a neurobiological excuse before we can accept them.

Parenting and education are not criminal justice

Often we describe children’s behavior and our response to it using a “justice” metaphor. We know we’re using this metaphor when we talk about whether a behavior was intentional, whether someone can help it, and what punishment would be fair or deserved.

Federal law in the United States encodes an “insanity defense” approach to educational discipline. When a child with a disability misbehaves, schools are required to determine whether the behavior was a “manifestation of their disability,” and the usual punishment may not apply if so.

I reject this whole framework. For me, the parenting ideal is to love, accept, teach and guide, not to judge. If a behavior is a significant problem and isn’t going to serve my son well, then I’ll discourage it (in the most developmentally-appropriate, empathetic, yet clear way I can come up with), and try to teach an alternative. It doesn’t matter whether he meant to do it or had malicious intent, what matters is whether he’s developmentally ready to practice and learn a better option.

Applying moral judgment to some skills but not others

We tend to view social incompetence in moral terms; if a child doesn’t know how to act in a social situation, we tend to say they are not only incompetent but naughty. We introduce the question of intent: did they “do it on purpose.” These questions don’t even arise if a child has trouble with reading or math. They should not arise for social skills, either.

Acceptance with allowance for growth

If you aren’t familiar with Carol Dweck‘s research on fixed vs. growth mindsets, check it out. It’s easy for all of us to underestimate our talents and our capacity for change. Whatever our capacity may be, we’ll be more likely to reach it if we see ourselves as able to grow — and less likely if we see ourselves as a collection of fixed attributes.

There’s a delicate balance, though. We might strive to forgive ourselves for being who we are today, without convincing ourselves that we must always be exactly that person. We don’t want to attempt the impossible (personally, I will never be a musician!), but we don’t want to give up too easily, either.

This stuff is hard.

An unhelpful question: “Is this caused by autism?”

Many parents and teachers find themselves asking whether a specific behavior is “part of autism” (and again, it’s encoded in United States law that schools must determine this).

It’s a trap — it has an intuitive appeal, but it’s wrong. We do need to cut people slack, including our kids, but let’s abandon “it’s autism so they aren’t responsible” as the reason.

Practical considerations:

  1. It’s false to say that autistics can’t help it, while everyone else can. Being human is a neurobiological phenomenon. It’s delusional to believe that anyone with any neurology walks around making conscious, rational decisions all day.
  2. It’s impossible to figure out what’s “caused by autism” and what isn’t — because autism isn’t separate from the person.
  3. Beware fundamental attribution error. We overestimate the effect of unique personal qualities (such as autism). We underestimate the importance of the situation and of universal human traits. We even do this to ourselves, adopting a fixed mindset and attributing our behavior and skills to our traits, when in fact we may be able to change more than we expect.
  4. Typical kids have tantrums and inflexibilities and repetitive behaviors, too. In the midst of a child’s temper tantrum, it’s tough to imagine a less-helpful question than “is this an autism tantrum or a regular tantrum?” Instead, always assume the child has good intent (they are a child!), and help them learn. Focus on how to help them thrive.
  5. When we try to guess what we can’t know, we become confusing, inconsistent parents; rather than offering stable, consistent, guidance, we add our own unpredictable guessing game to the situation.

Moral considerations:

  1. When we respond to a loved one with encouraging or discouraging actions, our purpose should not be justice and judgment; our purpose should be to help them, or help ourselves, or help us live better together.
  2. We risk viewing a person as a collection of symptoms and behaviors.
  3. The “I am a person and you are neurobiological” idea takes away a person’s humanity.

If you find yourself needing the “neurobiology” excuse to accept someone, ask why. Why do you need that excuse? Why can’t you accept them to begin with?

If I can’t ask “is this caused by autism?” what do I do?

Of course we need to recognize what people can do, and not hold them to an unrealistic standard. They may be limited by age and developmental level. They may be limited by their genetics. They may be limited by a physical disability. They may be limited by traumatic life experiences. Who knows?

When we cut people slack, we aren’t giving them a pass because “they can’t help it,” we’re giving them a pass because we’re realistic and understanding. Because we know everyone needs downtime, everyone needs autonomy, and nobody is perfect, We also know that we all are how we are.

But we shouldn’t give each other slack all the time. We can help each other grow by asking for more and allowing our loved ones to impress us with what they can do.

Parents are not a criminal justice system, nor are they God. If we reward good behavior and great accomplishments, and sometimes punish misbehavior, it’s not because our child “deserves” a reward or a punishment. It’s not (ideally) because we’re angry at them. Instead, it’s because we want to encourage our children to do things that will be good for them, and discourage them from harming themselves or others. This can be done clearly and non-negotiably when needed, but without passing judgment.

There’s also lots of room to leave our kids alone, and let them develop intrinsic motivation. Not everything needs a parental response.

When we respond to a loved one, we don’t need to look inside their head or guess at causes. If what they’re doing is dangerous or harmful, we need to communicate that to them clearly and consistently. If what they’re doing will be healthy and make them happy in the long run, we might encourage it, or we might let them find the intrinsic value in it. When we aren’t sure, or it isn’t an important issue, maybe we should stay out of it and accept them as they are.

Hard lines to draw, yes. But in a family, our job is acceptance, with occasional guidance. Our job is not to judge.

 

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relating to “far from the tree”

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!