‘She Got on the Bus’

TW: Thoughts & feelings on parenting a high-masking Autistic teenager.

This is MY lived experience.

For those who have been following our journey, you know my mantra.

‘She got on the bus’.

I first used this five years ago when my daughter went to her first school camp. A few weeks prior to camp, she didn’t want to go & was adamant she wasn’t going. She then came home from school saying that the teachers had shown the students photos from the previous years’ camp & she wanted to go but was still apprehensive & anxious.

So….. I got to work & made her a kick-arse detailed visual story filled with images about the camp, the campsite (including maps), got a daily schedule from the school & she had this security to make an informed decision with as many of her concerns alleviated as possible, given we don’t know what we don’t know!

This mantra was a tribute to the effort she & I made to prepare her & for her bravery & courage to get on the bus.

And, if she got on the bus & decided to get off before it drove off, that was ok too, because progress is celebrated way more than perfection any day of the week!

But something has shifted in the past five years. Her friends have matured* & become more socially sophisticated. The gap between her social understanding & her difficulties initiating social connections (& the removal of parental involvement in social arrangements) has been magnified significantly. It’s simply the nature of Autism, Autistic females & the passage of time. It’s literally a natural & inevitable evolution of social communication challenges.

*Now, I know that sounded insulting & hurtful. My daughter has matured also in her own way…. My focus here is on social understanding & communication, so I’m by no means being mean spirited or cruel or highlighting any of her deficits…. They’re not deficits, they’re differences, but sadly not yet understood, & certainly not ‘celebrated’ or seen as ‘super powers’ or ‘strengths’ by her peers.

If I’ve not explained that well enough, my apologies. But I need to brain dump, so I’m going to keep moving forward.

So, something has shifted in the past five years. Her ‘quirks’ can be annoying. Her repetitive behaviours can be bothersome, her echolalia aggravating, her bluntness considered rude, her honesty insulting & even if her peers don’t hide their displeasure (which is fair enough & understandable), my daughter can’t tell & won’t be able to tell; because she struggles to read their body language, facial expressions or body/facial gestures to know that she’s caused any upset. And therein begins the cycle of the myth that she ‘lacks empathy’ & doesn’t care about her friends which could not be further from the truth.

Teenagers are a complex, hot, hormonal mess, learning more about themselves every day, becoming independent thinkers & learning that they are responsible for their actions, reactions & will have to manage any fallouts or consequences of their choices or decisions (with or without parental input, or the assistance of other influential adults & positive adult role models in their life, because they’re still kids & from a neurobiological point of view not able to navigate this yet). Throw in one or more Neurological differences, high school & its demands, social complexities & the widening gap between your child & their peers, magnified sensory sensitivities & possible defiance/refusal to make self-care/hygiene a priority (as this is just another avenue that can be exploited, ridiculed, invites teasing & can result in social exclusion).

Back to my point…. A year ago, she ‘got on the bus’ & sat with a friend on the way to camp. On the way back she sat alone. Her rigidity, her black & white thinking, her bluntness, her complaining about things that her peers give no air time to (repetitively), her ‘staring’ at her peers – watching their behaviour, demeanour, mannerisms, gestures & echoing things they said/using the tone they used incorrectly, making demands without realising that turn-taking, sharing & compromising is required & necessary social currency. Her peers had not completed the Autism 101 workshop to understand my daughter. Their patience wore thin. They were tired, frustrated, confused & in need of a break.

In conclusion, camp last year was the start of some social issues for my daughter. There was no falling out, no argument, no fight, but plenty of confusion & not knowing how to move forward from either side. And then we went into lockdown so she didn’t need to see her friends each day & she doesn’t keep in touch with any friends outside of school & so that was that. By the time the kids went back to school, my daughter managed to hang out with a boy in her class & he introduced her to some of his friends & she started hanging out with a small group of people each recess & lunchtime. The friendships remained during school hours & never ventured outside the school gates.

I saw an opportunity at this time however to put together a friendship guide to explain Autism to teenagers in the hope that there might be one less lonely or misunderstood Autistic student at school somewhere & that maybe some explanations would foster understanding & inclusion. Check this out here: https://literallyausome.com.au/literally-ausome-friendship-guide

A year later, & a new school (that’s a whole other post) & it’s time for yet another school camp. I told my daughter it was up to her if she wanted to go but also said it would be a good opportunity to get to know other kids in her year level. Once again the impact of Covid was infiltrating everyday life & the school had made the decision to keep numbers down to avoid any outbreaks, so they split the year up, with half the classes going at the beginning of the week & the other half of the year level, the rest of the week… the benefit of which was there being fewer kids at camp, quieter & a legitimate opportunity to meet others.

I wrote about my feeling about sending my daughter to high school, here (https://literallyausome.com.au/putting-a-feeling-into-words-anticipatory-trauma/)knowing she’d be an easy target whilst also acknowledging how blissfully unaware I was of any incidents or any specific examples of her being excluded, ridiculed etc (not knowing anyone at the school) & as much as I loathed remote-learning, I knew while she was at home, she was ok & at the peril of no one.

This brings me to the crux, although it requires processing, so indulge me.

I need to state this clearly so it cannot be misinterpreted or misunderstood. It might not sound ‘polite’ or ‘nice’ or ‘fair’ or even appropriate, but I need to say it.

I have never ever been ashamed of my Autistic daughter. I’ve been angry & even resentful at the cards been dealt (yes to ‘me’ as I need to raise an Autistic child & all the challenges that come along with this neurological difference) because it, frankly, changed the course of so many things in our lives, including my own expectations, but I’ve never been ashamed of who my daughter is.

I have however felt embarrassed.Ouch. Right?!

What I mean is, I can get embarrassed when she’s said things to people in front of me that are in the wrong tone, has been annoyed about something, for example, when an item is out of stock in a shop & she expresses her feelings & displeasure over this to the sales assistant, or when she says things out of context or just completely random to everyone, other than herself of course. I also wish she took better care of her appearance & understood the importance of self-care. It’s just something else that she can be targeted for & it’s such an easy fix. This can also be embarrassing for me when she fronts up with food all over her face, refusing to clean it after eating as I’ve suggested (because forcing never works & isn’t nice for either of us) & me seeing the looks on the faces of those around us staring at food particles around her mouth.

Now, before I get caned for admitting that, let me be very clear….. I’m all about self-expression. I respect it. I embrace it. I support it. But self-expression is NOT about having the right to refuse to wash your hair, to not shower, or to have morning breath all day, every day. Surely that’s about self-respect. I mean if you’re not interested in taking care of yourself, does this mean you’re not interested in taking care of anyone or anything else? (I legitimately don’t have an answer for that; just a random thought at the end of an uncomfortable admission & fact).

Let’s move on then.

I get my daughter. I understand her. Others don’t. But when she says something odd, doesn’t make sense or is actually rude, I’m the middle person managing these uncomfortable situations; ensuring my daughter doesn’t get told off, corrected or schooled by the person she’s offended or gotten off-side (although would this be helpful?), knowing I’ll be judged for being a pushover parent allowing my child to be rude & disprespectful, while also managing to acknowledge the other person & expressing to them that their feelings are valid & warranted, but need to be, frankly, sucked up, cos this is not about them. And I do this all while not disclosing that my daughter’s Autistic because it’s not their business, my daughter has not granted me permission to do so & I also assume they’ve not visited my website or Facebook page & don’t know a thing about Autism…. so even if I said anything it wouldn’t mean anything to them anyway?

At the end of the day, I shouldn’t have to justify or explain anything to anyone & so I suck it up, allow others to make their own conclusions & judgements & unpack it all later. (It pains me to miss an opportunity to educate someone, but at the same time, I have to pick my audience & my moments).

Now before I get accused of being ‘an Autism mum’ making everything about me & positioning myself as a victim, I’m not. I’m sharing my thoughts, my truth & my struggles in raising an Autistic child in a world that’s only starting to understand Autistics & that Rainman was just a movie & just one story.

I am NOT making this about me. I’m not seeking sympathy. I am however asking for some understanding.

Parenting is fucking hard. Parenting Autistic children is fucking hard. Not being Autistic myself & trying to parent my Autistic children is fucking minefield.

I listen to & respect Autistic voices & their lived experiences. In truth, I CRAVE it because it’s the closest I can get to really understanding them, & therefore, be able to appropriately & respectfully support my children. But just like I respect the Autistic lived experience, I need it to be understood that this is literally MY lived experience. And just like I’m open to listening & being respectful of the Autistic experience, I’m asking the Autistic community that sees my words here, to respect this.

I’ve always vowed to do the best job I can at parenting my children. I always have, even before they were born. I knew I could only do the best I could with what I knew, using my own experiences & life lessons to help guide the way. But some days I feel as though I’m failing. I feel as though I’m failing simply because I’m not Autistic. I’ve ‘only’ got ADHD. Not relevant to my point, but highlighting my Neurodiversity.

Starting again. I feel as though I’m failing simply because I’m not Autistic. I don’t have an Autistic lived experience. I don’t understand how my daughter interprets or processes things, I can only make educated guesses by listening to Autistic adults who can provide me with this insight. And if you know one Autistic person, you only know one Autistic person, so I know I can’t conclude that what I’m being told even applies or impacts her.

I know with each day my daughter gains wisdom, insight, maturity & understanding of herself & so I need to wait for her to be ready & able to provide me with insight into ONLY her so I can accurately & appropriately support just her.

Parenting is fucking hard. Parenting Autistic children is fucking hard. Not being Autistic myself & trying to parent my Autistic children is fucking minefield.

So let’s bring this back to the point…..

A new year brings a new school. This time, there are plenty of kids that my daughter knows (from primary school). Although this school would be more supportive of her overall needs, the reality of it being literally closer to home, had me feeling really vulnerable. What I mean is, I’m going to start to hear about things my daughter would say or do in class & to others because it would get back to me merely by virtue of the number of kids & parents we know there. I hear stories about my daughter. I hear about the things she says repeatedly & annoyingly.

I hear things she says that are rude & offensive & how no one wants to offend her by telling her not to ‘say that’ or ‘speak like that’ or ‘say those things’. And I know I can’t expect that everyone would channel their inner Psychologists & Speech Pathologists, or social skills group, by breaking down every social interaction, but a little help from her peers would be so beneficial & one day, I’d like to hope, would be really appreciated by her. I mean, if you see a friend struggling in maths & you understand it, surely you’d offer to help explain it. Why can’t it be the same with socialisation? I think that’s a whole other post.

I’m proud of my daughter for recognising she needs breaks during the day so she spends recess & lunchtimes in the library alone listening to music. She enjoys it & needs it. Does it break me to know that she’s by herself? Absolutely. But if this is what she needs to do to get through her days, then I both understand & support it.

And it seems that her peers are more than ok with it too, as this gives her friends ‘a break from her’ too. I get it. I really do. I just wish I wasn’t privy to it.

Given the previous experience of camp, I was understandably nervous about her going this year. It was me who was dreading her getting on the bus. I lost sleep over worrying about how she would go, how to prepare her, her peers, her teachers & anyone else that would be able to appropriately & positively support her while away. I hoped that even if she came back on the bus sitting alone, it was out of her choosing & not a result of being rejected or she’d used up all of her friends/peers’ patience.

… ‘all I can think of is, ‘please don’t be like this at school’.

And then come the reports & stories & with each story I got, come forth the rain clouds of ‘cringe’. In desperation, I’d mentally keep dry by grabbing my invisible umbrella to shield me from the storm of embarrassment & to protect the ground beneath me from softening up too much & have me sink into the mud of emotional turmoil, otherwise known as, feeling utterly helpless which is the cruellest emotional position the universe could place me.

I get how my daughters’ behaviour, mannerisms & conduct can be annoying because I’m in the firing line each day too & it can leave me exacerbated! Nay, it literally annoys me. And for each time I get annoyed, all I can think of is, ‘please don’t be like this at school’.

And how dare I? All I want more than anything is for my daughter to be herself.

This is her. This is who she is. Her annoying traits are literally just her trying to fit in!

Except she gets it wrong.

And, I hear about it.

It’s feeling heartbroken & helpless every day.

And I can’t do anything about it other than wish the days away & for high-school to be over.

The worry I have each day is like the worry that mothers have during pregnancy; hoping & wishing that our children will be healthy. Once you give birth, you know for sure whether your child is healthy. But here I am 14 years later wishing that my daughter will come home from school ‘healthy’ & by that I mean unscathed, untouched & even (blissfully) unaware in the event of being the butt of jokes.

This daily worry is exhausting, painful, difficult & something parents like me rarely, if ever, admit to. This admission exposes our vulnerability & our vulnerability is well & truly tried, tested, questioned & challenged more than we even care for, yet is fiercely protected by whatever resources & energy, (or even fumes) we have left.

But the thing is, despite ALL of this; how I feel, how her friends feel, how her friends treat her, whether she’s included or not, whether she’s being ridiculed or not….. she keeps getting on that bus.

I need to keep telling myself that one day not only will she be on that bus, but she’ll be sitting next to someone that gets her, or is like her, & she’ll come back on the bus with her person beside her.

She’s literally the fucking bravest person I know.