To the parent whose child was just diagnosed with autism

Hi moms and dads 🙂

A little muse tapped me on the shoulder today to let me know that somebody out there needed to read this today.  Naturally, when that muse speaks, I oblige.  Because somehow, somewhere, she’s usually right.

So come on over and have a seat, and let’s talk.

You’ve just come from the psychologist’s or pediatrician’s office.  They said the A-word.  In connection with your child.  Or rather, they dropped it on you and it might have weighed a ton of bricks.

You might be devastated, grieving for a child that will never be like you imagined.  You might have felt all your dreams evaporate and vanish, like ghosts.

Relax.  Seriously, it’s OK.  You’ve got this.  And even though you might not feel that way yet, you will.

Because autism isn’t a boogeyman, nor is it even much of a disorder.  There’s an entire, new revolution taking place involving what autism is and how we think of it.

I’m here to have the conversation with you that you need to have.  The one that all the medical and psychological professionals in the world can’t have with you, and never will.

I’m autistic.

This obviously means two things.  First, it means that I was an autistic child.  Second, it means that I’m an autistic adult.

So, I’m like you in my adulthood (hell, I’m probably older than you 😉 ), and I’m like your child in that we share the same neurotype.  I’m going to try to use that to your advantage and help build a bridge between you and your child.

The first thing I’d like to say is…

Thought #1 – Relax.  Don’t panic.  Seriously, it’s going to be OK.

An autism spectrum diagnosis is not the end of the world.  In fact, it’s the beginning of a new one.

Your child is the same person they were before.  They’re different from you.  Every child is different from their parents, whether they’re autistic or not.  Yours just happens to run a different “operating system” in their brain. It’s like Windows vs Mac; both are legitimate systems; there are some functions that one performs more efficiently than the other, but neither is inherently better or worse than the other.  They’re just different, and they don’t always see eye to eye.  It takes extra effort to decode each other’s messages sometimes.

Thought #2 – Try not to grieve!  Autism is lifelong, not a life sentence.

Autistic children grow up to become autistic adults, and fine ones at that.  There are certain outward behaviors that autistic kids grow out of, as they learn to express themselves in different (and more constructive) ways.  Your child will blaze their own trail, walk their own path, and carve out their own space in the world.

As an autistic person, I can say that autism itself is not a bad thing!  It’s not a monster.  It didn’t steal me.  I’m not “locked in”.  I’m self-employed.  I’m in a longtime committed relationship (I’m married).  I live with my partner and two lovely cats.  On the surface, my life looks a lot like yours.

My inner world is a little more different.  I’m emotionally extra-sensitive.  Our home is designed to be comfortable, and friendly to my sensory sensitivity.  I have my own sets of quirky interests and talents.  I have a tight inner circle of friends.

Your child will not be a carbon copy of you or me.  They will be their own person.  With your unwavering support and encouragement, they will go on to evolve and develop their own talents and interests.  With your unconditional love, they can be happy kids and grow up to become well-adjusted adults.

Thought #3 – Consider alternatives, but consider the right ones.

Consider alternative viewpoints and perspectives (preferably autism-positive ones), alternative schooling (not necessarily special ed), alternative communication styles, and so on.

Forget alternative therapies and cures.  If your child is gluten intolerant like me, or does have heavy metal exposure (also like me), please know that these are common, and they’re going to create dysfunction in anyone who has these issues, whether they’re on the autism spectrum or not.  Since your child is autistic, they may manifest this dysfunction differently.  And by all means, go ahead and get that resolved.  But please know that going gluten-free or detoxifying heavy metals will not cure your child’s autism anymore than it would cure a non-autistic person of their non-autism.  The gluten or mercury did not cause or contribute to autism itself.  Your child will be healthier when you remove physiological triggers of inflammation or discomfort, but they will still be just as autistic.

In other words, separate the autism from the physiological dysfunction; don’t separate the autism from the person.

This is also why I follow up the topic sentence of this section with, “in fact, go light on all therapies meant for autism”.  This is because they usually do more harm than good.  They attempt to stifle the autistic person and reward them for masking and denying who they truly are.

Most of the “treatments” or therapies designed to make autistic kids seem “more normal” do real psychological damage.  And that is a life sentence.  Just scour Google for “why I left ABA” or “ABA + PTSD” and you’ll get a really good idea of what happens to autistic people.  Please, don’t do that to your child.

And be extremely wary of (read: run away from) anyone who claims to cure or treat autism or somehow “improve” it.  I should know; I’m a doctor who specializes in integrative medicine for chronic health conditions, and I hear my colleagues tout junk like this all the time.  They act like they have all the answers.  They don’t.  The truth is, neither do I, but as an autistic person myself, who lives “with” autism every day, I have infinitely more answers and knowledge of autism than they do.

Thought #4 – Let your child off the hook–sometimes.

An autistic person, children included, may appear to be lazy, defiant, obstinate, air-headed, “out of it” or any of the other things I was accused of being throughout my life, when in reality, they’re recharging from a stressful day, launching into a self-defense mode, experiencing anxiety, social exhaustion, or sensory overload.  Since most people’s brains won’t finish developing until they reach the age of 25, a 5- or 10-year-old person probably won’t be able to think as clearly or logically as an adult.  As with everything else, your child’s autism does not cause this (it’s true for everyone), but it may “color” it – that is to say that their individual traits will probably manifest differently.

So when it comes to physical activity or accomplishing tasks, and your child seems to be moving too slowly, please consider that they might not be able to get up and go just then, at that moment.  Consider that they will develop according to their own timetable, move and get things done at their own pace, and so on.  Asperger’s/autism seems to have its own schedule and autistic people have invisible drains on our systems.

The truth is, most of us can do everything that a non-autistic person can do; it’s just that it tends to require more energy and extra time to plan things out.

This is why it’s not a good idea to let them off the hook for everything, all the time.  Do nudge them, gently but firmly.

Thought #5 – Never assume anything.

When an autistic person appears lazy, don’t assume that they are.  The same goes for practically everything.  A garden-variety tantrum or adolescent angst/anger issues may actually be signs of anxiety or sensory overload or some other feeling of being overwhelmed.  Outward appearances can be deceptive.

Thought #6 – This is why it’s usually a good idea to overhaul one’s home environment.

You know that flickering fluorescent light that you hardly notice anymore, or the whine or rattle of an air conditioning unit that you can’t hear?  It’s often akin to torture for an autistic person, especially a kid, whose hearing is keenly sensitive.

They may not even be able to see the flickering of the fluorescent light, but their nervous system does.  All the child knows is that they feel very uncomfortable and hate being in that room.  They get the urge to flee to avoid that sensory input or stimulus and if they can’t, they might become unexpectedly combative.

That’s called the fight-or-flight response, and it’s hardwired into the nervous system of every living being.  Autism isn’t causing the problem, but it does increase nervous system function, and it does color the behavior.

Echoes on hardwood floors, bright sunlight, scratchy clothing material or tags, or even heat or cold can pose issues.

When an autistic person has a meltdown (which can happen at any time, at any age), consider that there may be real discomfort involved.  Physical ailments like headaches, skin itching, nausea, low blood sugar, dehydration, sleep deprivation, or general malaise can all be culprits.  Emotional stressors can play a major role, too – bullying, a feeling of incompetence, criticism, social exhaustion (excess social interaction or being out among crowds for too long) or a change in routine or sudden change of plans can throw an autistic person for a loop.  Meltdowns are usually not due to just any one thing.  And although it may look and feel directed at you, it probably isn’t.

Thought #7 – Children develop at their own pace, into their own unique individual.

The best strategy I know of is to love them where they are, accept who they are, give them time and space, give them latitude and leeway, give them freedom, and give them love and encouragement.

Yep, there’s a lot of “give”s in the previous sentence.  Because after all, that’s what parenting is.  This goes double for parenting children on the Asperger’s/autism spectrum. ❤

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Related Posts:

Praising us for acting neurotypical is *not* Asperger’s / autism acceptance ~ April 15, 2017

Asperger’s / autism as illustrated in a Mac-Windows analogy ~ September 24, 2016

They thought I was lazy…when I was just actually-autistic ~ September 18, 2016

The ‘bell curve’ of acting and masking in Asperger’s / autistic people ~ October 16, 2016

Dear Mom: Happy Mother’s Day!  Love, an Aspie ~ May 10, 2016

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