Things I Wish I Had Known About Autism

We always talk about autism awareness, but I think everyone is aware that autism exists.  I certainly was when my kids were born.  I had seen Rainman, I knew the deal.  I thought autistic people were always minimally verbal to non-verbal, and you could always spot them a mile away by their unusual noises and movements.  See, I knew the deal.  And then my son was born, and he was perfect.  And then he wasn’t.  He was diagnosed with ASD at four years two months.  The following is a list of things I wish I had known about autism.

Autistics Don’t Look Autistic

Autistic people do not look autistic.  Sometimes you can spot a person with ASD, yes, of course.  Often they stim loudly, or they might be extremely socially awkward.  But more often than not, you don’t have a clue.  The amount of times I have heard, “Oh, your son doesn’t look autistic” is ridiculous.  And then I get this incredulous look from the speaker like I am one of ‘those’ mums who need their child to be special, whatever the reason.  Never mind that my son has been in therapy for more than half his life.  Occupational therapy, psychological therapy, speech (for eating problems), behaviour therapy, equine therapy, social skills group, therapy playgroup, naturopath…it is a never-ending stream.  So, no, my son doesn’t look autistic, and neither do most other autistics.

Being Autistic is NOT a Death Sentence

When my son was diagnosed, I was devastated.  100% completely shattered.  I immediately thought the worst, and believed it was the end of the world.  And to be honest, it was the end of the world that I knew, because what I didn’t realize at the time was that I was venturing into a whole new world, one that would see me spending hours researching autism and neurodiversity, spending endless sessions in therapy, worrying profusely about my son’s anger issues, and discovering the joy of learning about my son’s gifts.  But it certainly wasn’t a death sentence.  I feel like we have been through battle and come out the other side victorious.  Yes, things have been more difficult for my son than for most other kids his age, but he is an incredible human being and at this point I can honestly say that I wouldn’t take him any other way.  I proudly declare, “My son is autistic”.

Autism is not Simply a Problem with Communication

Yes, a huge part of autism is a problem with communication.  As we all know, some autistics are non-verbal (which doesn’t mean they can’t communicate!).  Many autistics have difficulty making eye contact.  Some have trouble parsing out speech from other surrounding noises.  This is because autistic people have sensory differences, including sound sensitivity.  Yes, my son has bat ears and can hear a whisper from three rooms away.  I wish I had known about these sensory issues, because I might have had a clue as to what was going on with my son when he lost the ability to voluntarily roll over at one year old.  I know now that he has issues with his vestibular system and could not take any kind of spinning, rolling or flipping.  He also is adverse to messy hands, and refuses to take his socks off at all costs.  Change of seasons is difficult because he can’t transition into shorts from tracksuit pants.  And I have done the Wilbarger brushing protocol on him, twice.  Look it up, it is not fun.

Autism is a Spectrum, but that Spectrum is not Linear

We all know that autism is a spectrum.  Let me preface this by saying there are three categories: having autism traits, being ‘on the spectrum’, and having autism spectrum disorder.  This ‘spectrum’ does not go in a straight line from low functioning to high functioning.  It is more like a colour wheel, and autistics can fall at any place along this wheel spectrum, and it is never static.  Autistics have good days and bad days, just like everyone else, and sometimes they are more sensitive to the environment – those days they have more difficulties.  So don’t think of autistics as low or high functioning along a linear spectrum.  The spectrum is far more complicated and versatile than that.

Young Autistics Have a Larger Amygdala

Autism is a difference of the nervous system.  Autistic people often have a heightened sympathetic nervous system, and a reduced parasympathetic nervous system.  This means that from a very young age, an autistic person’s fight or flight response is exaggerated.  One theory is that over time, this causes the amygdala (the emotional center of the brain) to enlarge, which exacerbates the problem.  I wish I had known this, because there were so many times when my son was ‘misbehaving’, but really he was in a state of panic.  Instead of making him feel safe (and letting his overactive amygdala know there was no threat), I disciplined him, making matters worse.  I know better now and can easily see the difference between misbehaving and panic.

A Tantrum and a Meltdown are Very Different Things

We have heard this one before, but it is the truth.  You can’t know what an autistic meltdown is until you have seen one, and when you have, you understand.  Meltdowns cannot be helped, talked down, or rationalized in any way.  The person has lost control and therefore should not be punished; they simply need to feel safe.  A meltdown can take many hours to end and leave the person exhausted.  This would have been good to know from the very beginning!

Now that I have started this list, I realize I could go on for a very long time.  I was clueless about autism when my son was diagnosed, and it is my regret that it has taken me years to garner this understanding.  If I had this knowledge beforehand, I would have had a lot less fear when he was diagnosed, and I would have been in a much better place to help him.  An autism diagnosis doesn’t have to be soul crushing.  I can only speak for me, and I am truly hoping I don’t get backlash from other autism parents.  I know that there are parents out there who are yet to hear their children speak, and whose children have much greater needs than my own, and I have the utmost respect for them. But in saying that, everyone’s autism journey is different, and I have realized one thing: my son really is perfect after all.