Tag Archives: Parent

Parenting First, Autism Parenting Second

It’s common in the autism community to say (in effect) “because of autism, you have to do parenting this way.” This medicalizes the parent-child relationship; it converts the parent into a therapist, and risks looking at the child as “autism” rather than as a person.

I believe that most parenting decisions hinge on individual traits of family members, on context, and on one’s values. One’s exact approach may have to adapt to autistic traits; but other factors matter much more than anything we can assume from the autism label.

The breadth of parenting approaches

Parents are very different from one another. Here are some examples:

Parenting approach tends to be deeply entangled in cultural and religious background. A family’s daily life, and family members’ senses of self, arise in part from decisions about parenting.

It’s very common to see heated discussions of parenting approach on the internet (nothing to do with autism – I mean general parenting discussion).

People are very quick to judge others.

I expect most families have a reality that’s quite a bit more nuanced than these philosophical debates.

All of the parenting approaches in my list above, and many others, can be adapted to an autistic child. The values embedded in these approaches can still be expressed.

Many general parenting debates mirror debates in the autism community. For example, Alfie Kohn argues that typical families and schools today overuse extrinsic motivation.

The importance of context

In our rush to judge, we often forget the importance of context.

Parenting is a long gradual adjustment to developmental level; as a child ages, we expect more of them. Parents must continually adapt their expectations and approaches. If we see a parent we don’t know interacting with a child we don’t know, we might guess at developmental level based on the child’s age, but we could be quite wrong; as anyone acquainted with autism will realize.

Parenting has everything to do with context. If you see a parent buy their child candy, was that the only candy this month, or does their child live on candy? Most likely somewhere in between. But you don’t know.  If you see a parent react to misbehavior in a certain way, what preceded the misbehavior? What rules does the child know, what have they been asked to do? You don’t know.

What does a certain child consider to be a reward or a punishment? You don’t even know that, if you’re watching a parent-child pair. My son was staying up yesterday night doing a math workbook when he was supposed to be sleeping. Other parents might assign math workbook time as a punishment. Who knows.

Children respond to different styles

Many have made the observation that different kids seem to need something different from parents. One child might find rules chafing, and revolt against them vigorously in a way that makes everyone miserable. Another child might find it anxiety-inducing to lack clear guidance, and be much happier with a schedule and instructions to “do this, then do that.”

As parents we may often need to suppress our own vision of the kind of parent we’d like to be, and replace it with a vision of the kind of parent we’ve discovered that our child needs.

The parenting style that worked so well for one parent with their child, may be entirely inappropriate and even disastrous for another parent with another child.

Perhaps it’s a mistake to be too ideological about parenting, when ideology can blind us to the particulars of the children we have.

Families have different needs

Many (probably most) parents choose a few lines in the sand, where some rule of the household has to be followed or the family just won’t function. For some it might be keeping messes cleaned up, for others it might be that everyone gets enough sleep, for others it might be a period of quiet time after school, for others it might be eating dinner together, for another it might be going to church or using respectful language.

These traditions vary a lot across families, and they depend on individual values and temperaments. Like making a marriage work, to make a whole family work involves compromise, finding the place where all the people involved can coexist. There’s no “right way” to navigate these issues; it depends on who’s involved.

Keeping the focus on family

It’s harmful for any of us to tell parents how to parent, based purely on “autism,” with no knowledge of their specific family or specific child or specific cultural background.

Many autism therapy programs include a valuable parent training component, and parents do need and appreciate hearing experiences of autism, from autistic people, from other parents, and from autistic parents. I’ve found parent coaching incredibly helpful; and many parents say their “autism parenting” coaching helped them quite a bit with their non-autistic kids too.

But in these contexts, we have to draw careful lines. There’s a line between helpful advice and “back-seat parenting.” There’s a line between providing information and dictating our own values to other people.

I’ve seen both therapists and autism community members step over these lines. I’ve also seen parents violate their own lines, searching for and using someone else’s autism-related advice when they should be making a decision based on their values.

Most importantly, there’s a human, everyday parent-child relationship. There’s a family, and happy families find quirky and distinctive ways to make the family work for all the family members, even if it looks a little strange from the outside.

 

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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!