The only consistent thing about life is that it always changes.
Nine months ago, I posted an update about how well my son has been going to school. Now, it feels like we’re right back to preschool.
Regressions are a hallmark of autism. Anything can bring them on. A growth spurt, a physical ailment, a stressful situation, a change in routine, anything different whatsoever, and a child on the spectrum can lose months’ and even years’ worth of progress. Worse is when the regression happens for no discernable reason at all.
I see you, autism parents. This part is heartbreaking.
Lately, my son has been having a lot of anxiety about school. I’m not fully sure why. I suspect a combination of many things, but I won’t betray his confidence and list them all. All I know and will say for certain, is that we have gone from a cool and confident kid strolling across the playground with ease, to one who crumbles just outside the car when I pull up to the school, and begs not to go inside.
The thing is, once he is inside, he progresses through his day like normal. There is just something about the transition from the vehicle to the building that is causing him panic and distress. It breaks my heart.
A shout-out once again to the amazing staff at his school: they came up with a plan.
They have shortened his walk time to nearly zero. Now when I come to the school, I circle the block and wait for the school bus to leave. Once it is gone, I pull into the bus zone mere feet from the main entrance and help him out of the car. His aide, his LST (Learning Support Teacher), and the principal all step out and meet him with exuberance. A few high-fives, and a few cheerful words later, he is through the doors without even realizing it, and his day can proceed. These women are nothing short of superheroes in my book!
I want to bring up something that this whole situation has highlighted for me once again (and again and again and again…). Please check in with your friends.
There is a little piece of advice that I’m sure you’ve heard before:
Check in with your strong friends.
Check in with your strong friends, because they are strong for a reason; they have been through hard things.
Check in with your strong friends, because they may not have a choice but to be strong, and they are tired.
Check in with your strong friends, because they are the ones putting on a brave face while battling mental health issues.
I want to give a similar piece of advice to you all today, just a variant, really:
Check in with your friends who were fine last time.
Check in with your friend who is a special-needs parent, but was fine last time, because they may be facing a new challenge.
Check in with your friend who has lost a loved one, but was fine recently, because a special anniversary may be coming up that is breaking their heart all over again.
Check in with your new-mom friend who was doing fine last week, because maybe this week all the novelty wore off and her helpful visitors stopped coming by.
Another variant:
Check in with your friends who are always checking in on others.
Check in with your friends who are always checking in on others, because someone with that kind of empathy is usually suffering themselves.
Check in with your friends who are always checking in on others, because they are not immune to trouble.
And check in with your friends who care for others professionally, (nurses, therapists, personal support workers, pastors, non-profit workers…) because everyone seems to assume they are fine without asking them.
These past few weeks have been really awful. The few weeks before the school came up with the plan to get my son inside, I spent every morning sitting in the snow beside my car in -30C temperatures, shivering as I validated my sons feelings and reassured him over and over again. I cried and I mourned the days when he was little enough to scoop up into my arms and carry him to safety, as I used to. I was a wreck.
These past few weeks as I struggled to get my son through the door, I had a troublesome feeling. I felt angry with myself for ever sharing how well school had been going. I felt stupid for letting people know things were fine, because now they were not fine again, but no one knew they weren’t fine, and no one was checking on me to see if I was fine!
A little ridiculous, right? It’s not healthy to wallow in the bad all the time. It’s healthy to share when good things happen! Yet, the regret I was feeling was very real.
I realized that I wasn’t actually regretting sharing my good news. I was regretting that people seemed to have scratched my name off the friends I need to care about list after I shared my good news.
So, a new day has dawned, and I have resolved to share with my friends more often. The bad, as well as the good. But I also hope to encourage some of you to make a resolution of your own to check in with your friends.
The only consistent thing about life is that it always changes.
We can all go from fine to not fine in an instant.
Check in with your friends frequently.
© 2023 Ashley Lilley – First time commenting? Please read my Comment Policy.
Ashley Lilley 
I remember when the boys were young how well things were, and then when I spoke to my mom about it, something would happen. There are always set backs in life. I know it is much harder with an autistic child. There is nothing wrong with being happy and sharing when things are good, and then when things are not. One thing I am learning is that we have to learn to reach out to others when we need the support. We can’t read each other’s mind. I wish I lived closer to be there and help out. I am only a text or phone call away. Sometimes we just need to let someone know we are not having a good day to say, I get you, and/or to know to pray for you. Sometimes talking out our frustrations helps.
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Thank you. Talking about it does help so much.
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A regular-school environment can become an autistic child’s traumatizer; the trusted educator the abuser.
I don’t know if I’m repeating myself at your blog, but as a boy with an undiagnosed autism spectrum disorder [not to mention high sensitivity and resultant also-high ACE score], my primary-school teacher was the first and most formidably abusive authority figure with whom I was terrifyingly trapped.
I cannot recall her abuse in its entirety, but I’ll nevertheless always remember how she had the immoral audacity — and especially the unethical confidence in avoiding any professional repercussions — to blatantly readily aim and fire her knee towards my groin, as I was backed up against the school hall wall.
Luckily, she missed her mark, instead hitting the top of my left leg. Though there were other terrible teachers, for me she was uniquely traumatizing, especially when she wore her dark sunglasses when dealing with me.
But rather than tell anyone about my ordeal with her and consciously feel victimized, I instead felt some misplaced shame: I was a ‘difficult’ boy, therefore she likely perceived me as somehow ‘deserving it’.
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This is a horrible tragedy that many autistic adults have faced in childhood. Before there was a label of “autism”, autistic kids were constantly labeled by teachers and parents as “lazy”, “troublesome”, “uncooperative” and so much more. These kids got punished for crimes they weren’t intentionally committing! I breaks my heart that they received abuse instead of the help they deserved.
I am so so sorry this has been your experience. Thank you for being brave enough to share it.
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Ergo, I feel that school teachers should receive mandatory ASD training. There could also be an inclusion in standard high school curriculum of child-development science that would also teach students about the often-debilitating condition (without being overly complicated).
If nothing else, the curriculum would offer students an idea/clue as to whether they themselves are emotionally/mentally compatible with the immense responsibility and strains of regular, non-ASD-child parenthood.
It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent, when in fact such behavior is really not a choice.
And how “camouflaging” or “masking,” terms used to describe ASD people pretending to naturally fit into a socially ‘normal’ environment, causes their already high anxiety and depression levels to further increase.
Of course, this exacerbation is reflected in the disproportionately high rate of suicide among ASD people. ….
Thank you, Ashley, for your posted articles.
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Thanks for posting. I personally hate the word “regression”, especially when used in regards to autism. Most professionals who use it doe so in a derogatory way. They blame the child for “failing” or “being weak”, and automatically assume that the loss of skills is permanent. They typically aren’t, although when those skills/abilities will be available for use again is unknowable in the present. Last year I realized something important, and it keeps coming back to me as I’ve progressed through a difficult year+: What professionals call “regression” is more often a loss compensatory skills, caused by increased stress and/or fatigue. Certainly for those of us who are adults on the spectrum anyways. And really, if you look at typical child development, it’s pretty common for all children to lose certain skills/abilities while they are learning new ones, only to pick those lost skills up again once they’ve mastered the new. It’s just more pronounced (and perhaps more mysterious) with autistic children.
What I’ve experienced over and over again in the last year is the loss of many compensatory skills, many of which I’d forgotten *were* compensatory, and frequent losses of my entire “interface” that allows me to function and/or comprehend the NT world. … But they always come back eventually, sometimes quickly, sometimes after an extended period of time. When my brain has the cognitive resources to access that information again, the knowledge and the ability to execute that knowledge comes back. When I don’t have that kind of energy, it all falls out of my ability to access it. But the information is always stored in the back of my brain somewhere. It reminds me of a couple things I’ve heard from my autism specialists at different times. 1. You never permanently lose knowledge once it’s been gained. Whether or not you’re currently using it. 2. There’s a big difference between having skills and having the ability to *use* those skills. The autistic brain doesn’t always cooperate with the latter.
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I really like your explanation here. I agree that a “regression” to past behavior or “less advanced” behavior is usually a sign that the person is overwhelmed by new things, or is experiencing burnout.
I have noticed this with my son. There is a skill that is hard for him. Whenever he goes through a growth spurt or a life change, this is the first skill to get dropped for awhile, because there is just too much going on with him at the moment to keep up with things that are difficult to maintain.
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