Autism: It’s not OUGHTism

Parents,

If your child is recently diagnosed with autism or you’re in the process of seeking an evaluation, you’re probably wondering what therapies they need.

The world aggressively pushes intensive interventions. Very. You’ll be spoken to by professionals as if there’s no option, just next steps.

As frequently as an inhaler follows an asthma diagnosis, your child’s doctor will likely recommend applied behavior analysis (ABA) therapy, occupational therapy (OT), speech therapy (SLP), and maybe even physical therapy (PT).

At my daughter’s most recent developmental pediatrics appointment, her doctor did, in fact, recommend all four of those therapies. It was more like a demand than a recommendation. There was the unspoken implication that not doing so would be neglect.

I said no to all four of those therapies.

One day, not soon enough, this frantic urgency will be recognized as one of those ridiculous social norms everyone agreed to for no reason, like corsets, a tanning salon in every strip mall, unilateral white male leadership, teachers smoking in classrooms, panty hose, and not wearing white after labor day.

If a therapy is advertised to you like a commercial, that is because it is a commercial. It is there to convince you that you need something and without it, you’re missing out.

Slogans like “gold standard,” “evidence based,” and “four out of five doctors recommend it,” might just translate to, “Capitalism is good at convincing the majority of people what they need.”

If modern American history has taught us anything, it’s that a free market is highly effective at influencing the way a society behaves based on how effective advertising is— even if everyone agrees to do things that make no logical sense, serve no practical purpose, or even cause serious harm.

Your Autistic Child’s Skills Are Not Lagging

Your neurodivergent children are developing on different timelines. That’s literally what it means to be neurodivergent.

I cannot stress that fact enough.

Every brain has a hard-wired developmental trajectory.

This means that a brain is wired to develop a certain way. Most people’s brains have a very similar blueprint. They’re like a community with a bunch of similar houses that have different color shingles and doors, some have a garage, and the yards have different, yet tasteful, ornamental shrubs. They all have a kitchen, bedrooms, closets, and bathrooms. Some have dens, some don’t.

Autistic brains are very different— from non-autistics and from each other. Some are yurts.

Or an RV…

Or an expansive warehouse with no bedrooms or kitchens…

Or a giant water park with floating bounce castles and no seating…

That last one is most like my daughter’s brain.

I’m not willing to tone down her colors or deflate her for anyone else’s ideas about how she’s supposed to be.

Sure, that’s not going to mesh with the homeowner’s association… And I’m choosing not to care.

Let me explain.

Meeting Milestones

Your autistic children are not meeting milestones at the same time as neurotypical (NT) peers because they do not have the same brain as NT peers.

Your child does not have fewer neural resources than other children. Those resources are just distributed differently.

While other kids are developing gross motor skills, your child might be developing an intense appreciation for visually beautiful things, the refined palate of a future master chef, or the word appreciation of a future novelist.

That is, unless you derail their developmental blueprint by deprioritizing the developmental skills they’re mastering at the time their minds are wired to master those skills.

For most skills for most autistics, your child will eventually get there without intervention.

Your four-year-old child might not be able to dress themselves or toilet independently, but they will likely be able to before they are ready for college.

Sometimes, they never develop a skill others have to the degree that people without disability develop skills. Many autistic adults with college degrees can’t read a clock or tie their shoes. Many never develop the gross motor coordination or spatial awareness to go a day without tripping up the steps or stubbing a toe.

I am that autistic. I also chronically write letters backwards. No amount of intervention stopped that from being a thing, but it really doesn’t matter. I just type.

But, over-therapizing your children will not set them up for success. It will, however, accomplish the following:

  • cause them to internalize that they are inherently broken
  • interrupt their natural development by working against their neurology and disrupting their natural skill development
  • prevent them from focusing their neural resources on the developmental skills they are wired to focus on during the timeframe they are wired to develop those skills

Your child’s autistic brain is like any brain. It is going to develop at a certain time the way it’s wired to. It’s going to pick up and lose skills. It will experience developmental leaps.

Your autistic child, like mine, might be reading before they are two years old. She read before she could speak.

Because my daughter didn’t speak at the same time as most kids, I was told by professionals that she had “severe, classic autism” and that she was intellectually disabled and would never be able to live a normal life without intensive therapy.

Thankfully, I had already found the autistic community.

I was immune to their doom forecasting. We went home after that evaluation, and I read her favorite book to her for the 3,216,129 – 3,216,145th time, we ate with our hands because forks are hard, and then she took a nap listening to the same album she listened to for the first three years of her life.

Imagine if most children were expected to develop on my child’s timeline?

It wasn’t long after that initial evaluation that my daughter began to speak. For a few years, she mostly just said nouns– labeling things, or numbers.

But, it became clear when she did start saying words that I was, in fact, right. She could read.

At the next appointment, she was diagnosed with hyperlexia.

It would be abjectly cruel to enroll non-autistic children in intensive reading therapy at age two. They’re not wired for that. It would disrupt their development. They would internalize that they are “slow.” They’d feel like a failure.

But the failure would be on the adults who prioritized social pressure over their children’s developmental needs.

As a society, we are failing our autistic kids.

Most children will eventually be neurologically ready to begin reading by age 5. It would disrupt their development to condition them to try to read at age 2, and it would stunt the skills they’re wired to be mastering at those ages, like being able to run and jump, using short sentences, and pointing.

It would be abusive to push most children to develop on an autistic child’s timeline.

It is similarly abusive to push an autistic child to develop on a neurotypical timeline.

So, therapy is bad?

Therapy isn’t always bad. But your child’s access to a happy and healthy future does not mean they need toddler boot camp.

Most likely, those “lagging” skills will come along later without therapy. What they never master, you accommodate.

Accommodations are fine.

And guess what… there are a whole lot of things autistic people can do that you’d need accommodations to do. There are things autistic people can do that no amount of accommodations would get you there.

We don’t get to showcase those things too often, though, because they’re devalued from a very young age and being “normal” is prioritized. We learn that what we can do so very well is unimportant. Society doesn’t even make room for those skills to be used because most people don’t have them.

When does my autistic child need therapy?

If your child is experiencing challenges that impact their medical health or mental health, they need therapeutic intervention. I’m going to list some examples to help you see how that looks:

If your child can’t swallow without choking frequently, they need to see a speech therapist specialized in swallowing issues or an ENT.

If your child is experiencing frequent distress and meltdowns for issues you are unable to identify, then they need an OT specialized in sensory.

If that OT helps you to understand your child’s sensory profile and how to adjust the environment and how you interact to help you support your child to not live in sensory overwhelm:

If an OT wants to “help” your child by exposing them repeatedly to what distresses them to build “tolerance”…

If your three-year-old isn’t eating with utensils, then just let them eat with their hands. Join them, even. Lots of cultures eat with their hands because they value the mindfulness of the sensory experience.

If your child can’t nod their head or point by age 3, just wait longer.

See how easy and stress-free that is?

Picky eater?

Do your best and get multivitamin gummies.

Can’t drink without a straw?

Neither can I. Just use straws. It’s really that simple!

If your child isn’t using mouth words by age 3, try other forms of communication. If you’re able to happily get on and meet their needs because you’re super dedicated to getting to deeply know and understand your child and be responsive to their ways of communicating, then it’s a good time to begin exploring AAC options.

You can explore AAC with a speech and language pathologist. If they try to force your child to use speech to get their needs met…

It becomes a lot easier when you have reliable and specific communication, and that might be with spoken language, an AAC device, or through spelling on a letterboard with rapid prompting method (RPM) or spelling to communicate (S2C).

Check out Autism Level Up’s, All the Feelz, “a suite of visual tools designed to honor the complexity and the multidimensional nature of feelz for autistic people.”

If someone tells you the way your autistic child is playing is wrong, and they need to be taught how to play…

Here’s some tips on how to play with your autistic child:

How to Play with Your Autistic Child

How do I support my autistic child?

What your child needs, more than anything, is healthy attachment to their primary caregivers.

You.

This does not mean they need to experience your love the same way a neurotypical child would. It means they need to know their parents and family love them, accept them, respect their bodily autonomy, and enjoy their company without always projecting onto them extreme stress because they aren’t like most kids.

If you’re forever worrying your child is going to be miserable and trying to manipulate their present to improve their future, your child is going to be miserable now and in the future.

Your biggest regret will not be that you didn’t enroll your kids in enough intervention therapies. It will be that you spent their formative years panicking over their every difference instead of just enjoying getting to know them.

Your autistic child will absolutely notice your urgency to change them. More than protecting them from future bullies, you need to protect them from your stress about their differences.

They will grieve the life they didn’t have. So will you… not because they were autistic, but because you thought that autism was a problem.

Do you want your future child to have meaningful relationships and a happy life?

Focus on forming secure attachments with them by getting to know them– NOT by letting strangers (therapists) force-feed them, undress them and force them on a toilet, expose them to loud noises trying to make them more tolerant, or force them to use spoken words to get their needs met.

Your child’s future health and happiness depend on not being traumatized or developmentally manipulated in their most formative years. Don’t focus on what you think they OUGHT to be. Love on who they are.

How do I make reparations if I’m already living with regret over being conned into harmful therapies or pushing too hard for “normal”?

Autistic people love honesty and authenticity. Tell them you’re sorry and that you were wrong, and then make a whole life’s commitment to not caring about neuronormative standards of anything. Invest yourself in learning what your child loves, what they think is funny, what they’re good at, and what they can teach you.

Invest yourself in fighting for their right to communicate the way that works best for them.

Invest yourself in fighting for their right to an age appropriate education instead of fighting against their neurology.

Invest in their autistic joy. Invest in sensory supports and accommodations.

My child is the happiest child I’ve ever met. I don’t think she’s ever thought for a second that maybe she’s not enough, that she’s not seen, that she’s not loved, or that maybe she needs to be something else.

I’m not a perfect parent. I’m a lucky one. I didn’t have any internalized wisdom. I was full of ableism and didn’t even know it— and I am Autistic. I found the autistic community in time to be prepared for that trap.

If you didn’t, that’s not your fault. I just happened to have a local Autistic friend who clued me in just in time. I didn’t even know an Autistic community existed.

The good news is that you’re here now. That means you respect Autistic people enough to learn from us. That’s exactly where you need to be.

We will help you learn how to support and understand your autistic child so that you can get to know them for who they are.

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2 Responses

  1. Terra, great piece as usual. It makes me wonder if I had an advantage, not being diagnosed until I was in my 40s. The therapy I’ve received since then has been at my choice, my own direction. But kids can’t make those choices as 8 year olds. Hmmm

    1. Terra:

      You have described parenting of autistic toddlers quite well. Especially when faced with decisions being forced upon you and the children from the medical community… I’m continually learning more and more from your experiences and those of others who write and share their own experiences and feelings herein. Good job. And thanks for sharing. Makes me appreciate the stoicism of a young 18 hr. old, rather focused green Greta even more.

      Carbon Bridge

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