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The One Label I Just Can’t Get Behind.

“How high functioning is she?”
“How severe is her autism?”
“Wow, she can’t be that autistic!”

Oh my god. ENOUGH already!

I have lost count the amount of times I hear people (who obviously know nothing about the autistic spectrum) try and categorise my autistic daughters, attempting to shove them into boxes to better their understanding. I am all for labels, in fact – I encourage the diagnostic process for autism, because I stand by the benefits of support that the diagnosis can bring.

But one thing I cannot get behind is the whole  high/low functioning divide. I just can’t do it, and I won’t.

Why not?

Because this type of label doesn’t help, it hinders. It minimises the struggles an autistic individual can have, and it silences and invalidates them.

Just because someone who is autistic can talk and interact with others, doesn’t mean they don’t have other challenges and doesn’t mean the challenges they do have make less impact on their lives. You just can’t see it, and just because you can’t see it doesn’t mean it isn’t there. This is the same with a non-verbal autistic individual; just because they can’t talk doesn’t mean they aren’t incredibly intelligent, perceptive and intuitive.

The thing is though, if you box individuals on the spectrum into these high/low categories – you’re the one missing out. You’re missing out on being able to support them through their silent struggles, and you’re also missing out on being able to notice how they can enrich your lives.

Does the fact that someone can talk make them more important or worthy than others? No. Does the fact that someone cannot talk or shuts down socially around others mean they don’t have valuable things to contribute to society? No.

Autistic people are not puzzles that need to be solved. They are not a problem that needs to be fixed. They are not an irregularity that needs to be corrected. They are individuals, unique in themselves just like every other person on the planet.

So this whole high/low functioning  categorisation really doesn’t come into it.

At the end of the day: it is all autism. And the best thing we can do as a society for our neurodiverse community is embrace them for who they are; as amazing individuals.

No, She’s Not Grumpy – She’s Autistic.

If I had to tell you how many times people have commented on my daughter Beans’ disposition as being “grumpy”, well.. I’d completely lose track. It happens daily, really. But the thing is; she isn’t grumpy – she’s almost 3 years old, she’s a toddler, and she’s also autistic.

If you knew she was autistic, you’d know she doesn’t get “shy” around strangers, she actually struggles socially.

If you knew she was autistic, you’d know it takes her a long time to warm up to people.

If you knew she was autistic, you’d realise that trying to get her to give you eye contact or say hello is really distressing for her, and you’d back off.

If you knew she was autistic, you’d know it takes her about half an hour to decide on what item of clothing to wear every morning; and that despite having a wardrobe full of clothes – she only regularly wears about eight items.

If you knew she was autistic, you wouldn’t use the hand dryer right beside her in the public toilet and you wouldn’t mow when she was around.

If you knew she was autistic, you’d understand why she likes her food divided up sometimes.

If you knew she was autistic, you’d be compassionate and understanding when you see me carrying her everywhere – because her legs tire easily, and they hurt.

If you knew she was autistic, you’d know that if the morning routine is deviated from in any large way without warning ; she screams and screams.

If you knew she was autistic you’d know how much thunderstorms terrify her.

If you knew she was autistic you’d know she completely falls apart when she’s itchy.

If you knew she was autistic you’d know that some shoes can take a long time to put on comfortably.

If you knew she was autistic, you’d see how at peace she was when she was playing in water.

If you knew she was autistic, you’d realise that an iPad or an iPod is a parenting tool – not a display of bad parenting.

If you knew she was autistic, you’d realise what an epic mimic and imitator she is, and that she’s processing her world through watching and copying others.

If you knew she was autistic, you’d see that her lining up things and having collections is super calming for her – not funny or odd.

If you knew she was autistic, you’d know that when she’s screaming on the floor and I’m not cuddling her or touching her it’s because she doesn’t like to be cuddled or touched when she’s upset, it’s not because I’m a bad parent.

And finally: if you knew she was autistic you would know that when she smiles – it’s authentic, when she laughs – it’s from the heart, not just there to please you or make you feel recognised. When you see her for who she is rather than what you’re getting out of her, you’d realise that she is so much more than just “grumpy” – and you’d put your judgement aside.


Toilet Door Affirmations.

Some people I guess would pen me as a hippie, due to the fact that I haven’t shaved in over 8 years, the fact that I birth my babies at home and still breastfeed my almost-3 year old daughter. Meh. Call me what you will, truthfully I don’t give a shit because I know who I am. One thing I definitely believe myself to be is a person who likes to look outside the box, and question everything.. and I am proud to be a woman with an open mind.

I believe fiercely in the power of thought. This comes into play with how we as people interact with each other, how we regard ourselves and our individual capabilities, how we learn, how we labour and birth, how we achieve, how we overcome obstacles and how we ready ourselves for new challenges.

(click on the photos to enlarge for viewing)


Self-talk in particular is powerful. It is the lines or phrases  we tell ourselves in times of challenge. You know; when you say “I’m going to have a crap day” you usually do, and when you tell yourself that something is too hard – you often get defeated? Yeah. That sort of thing. So when I hear my girls saying things like “I can’t do this” or “This is too scary” or “I’ll never be able to do that” I am quick to help re-frame their self-talk. Changing the phrases into “This is tricky, but I will get it” or “I will get the hang of this with practise” may seem like a simple thing to do yet can have lasting impact.

Where I am going with this? I wanted to tell you about something I do for my girls. I print out affirmations for them and stick them on the back of the toilet door. Why? Because I figure it’s a place they’re still and quiet for a reasonable amount of time every day, and I like to think that the lines of strength and courage they read may translate into action, cancelling out other negative ones. I am hoping it will gently alter any negative self-talk they may have.

On the back of our toilet door are words which dispel the power of fear, re-frame challenges and hopefully impart strength and courage to the minds of those who read them.

Meh. Maybe it’s crazy and pointless, but I figure it can’t hurt. And I also figure with all the inane, degrading shit that penetrates subliminally from the media into the minds of our young girls, they’re going to need any positive self-armoury they can muster – and that counts for the messages they send to themselves, too.


Dear Daughter as you near your 10th birthday,

I see you growing up right before my very eyes. Your body is changing and you’re noticing every single occurrence, both welcoming it with excitement and feeling overwhelmed from it, because, really, you’re still so very young.

I watch as you come and wrap your arms around me awkwardly, all legs and arms.. and then no sooner, you’re running off to your room, slamming the door behind you because you want to be left alone.

I know you’re in this place of in-between. I can’t imagine how frustrated and confused you feel. But I want you to know you’re not alone.

We argued this morning, we both said words we didn’t mean and although we have both since apologised and made up, it’s still lingering with me. I don’t want to be someone you can’t talk to, but also, if you don’t want to talk – that’s okay. You don’t have to talk. Silence is good with me, if it’s with you.

I’m in a place of watching you go through changes hormonally that seem totally out of your grasp, and I just want to hold you. I want to tell you it’s okay. I want to tell you that it gets easier.. but I don’t know if it does. Maybe it’s not that being a woman gets easier or if it’s just that we become stronger. Because we learn to embrace our innate feminine power and all that comes with it. Slowly we learn to surrender to the ebb and flow rather than fight against it.

But daughter, I can see why you’re fighting against it. It’s new and relatively unknown, and being a woman isn’t easy. Becoming one is even harder. I can understand why you’re fiercely trying to hold onto your childlike innocence, I can see that you don’t want to grow up.

Here’s the thing, though. No matter how old you are, no matter how many moody outbursts you have or how much you try to push me away – I will always be here. My love for you is not conditional – you may outgrow your clothes but you’ll never ever outgrow me. I will always have time for you, I will always make time for you and I will always be in your corner.

I know this shit is tough. And I’m more than willing to let you live your life, your way, as you learn to navigate it independently. But nothing you can ever do will make me not love you, and there will never be a time I won’t be your constant.



A letter into the ether.

I know I only just spoke to you before on the phone, but that doesn’t mean you’re really here. You haven’t been here for a long time now.

I’m struggling at the moment, and in truth I feel like I probably have been for a while. I called you up today because I was hoping to hear your comforting voice on the end of the phone line, like a big hug – but while I waited, it never came. Instead our conversation went around and around in circles with you asking me the same set of questions three times,  until I begged an excuse and got off the phone, and began crying in the car as I was driving to find a place to write you this.

Truth is, I don’t ever hear from you. You completely forget, unless I call – and then when I do, you’re endlessly apologetic. Your world fluctuates between you work, caring for your Mum and then getting sleep. And really, that’s all that you can manage.  I know you never intend to hurt me by purely forgetting that I exist, but my heart is fucking throbbing with the pain I feel for being abandoned. I know I hear you say every time on the phone that you’ll “try harder” to remember to call me but I’m realistic enough to know it won’t happen. It isn’t your fault. But that doesn’t stop it from hurting.

I know there are darker days to come. You’re already confusing your own granddaughters name’s up and I know there comes a time when you’ll probably not remember my own. I feel the sting of your mind beginning to phase me out of your recollection and memories and it is tearing my heart into two, because I could really use a Mum around now. Someone to hold me, after my daughter has screamed all morning and to tell me that it’ll be okay, and tomorrow’s another day. Someone to take me out for cake and shoot shit with me, because it’s fun and that’s just what we feel like doing.

I’m already grieving you now even though you’re still living, and I don’t know whether that’s easier or harder than the alternative. Having a memory of someone sharp in your mind with a perception of how things should be is a daily reminder of what isn’t.

You keep calling yourself an “idiot” and how you’re “stupid” but this isn’t the case. It isn’t your fault, or your choice. And I’m probably incredibly selfish for even making this about me, but I just had to get it out.

Being a mother to four girls myself provides me with a new chance every day to do things right and be present. But somedays I don’t want to be a mother, I just want to be a daughter. I see how you’re there for your own mother and dote on her compassionately, and I am desperate to have the same kind of attention from you. I don’t know whether it’s because you “let me go” sooner than you did with Oma, or not, and that’s why her memory has stuck around for you more than mine has.

Either way, I’m hurting. I know I’ll be okay but the pain of losing someone who is still living is intense and all-consuming at times. There are countless what-ifs and whys racing around my head that I know will eventually be set to rest, and I’m working on it, but I’m not there yet. You’re there but not. It’s like you’re in this in-between state of worlds from back then and now, and I can’t imagine how exhausting and confusing that feels for you. Others around you are working to help themselves make sense of your new reality, but you’re not at any level of acceptance yet.

I just miss you, Mama. So I’m sending this out into the ether with a hope it’s a little healing and I can let go of the wanting and accept the what is. You’re only fragments of who you used to be, but I’m still fully here.

And it’s okay. Because it is what it is.


Sensory Tool Box.

I was going through Sno’s room yesterday, helping her sort out all the junk she has hoarded over the last few months and we came across a pretty wide selection of sensory tools, so I thought  (with her permission) I’d share them with you. Sno is happy to share this stuff and hopes that in sharing what works for her, she can help other kids on the spectrum, too.

A little bit of background first. Sno is almost 10 years old, and she received her ASD diagnosis almost 4 years ago. Over that period of time we have found what really works for her to self-calm when she’s having a meltdown, and we also know what aggravates her sensory system. We follow the Zones of Regulation program at home (and at school) and after a bit of trial and error, her tool-kit is pretty perfect now.

Sno loves:
Tactile toys.
Deep pressure.
Nice smelling things (particularly citrus and mint).

Sno doesn’t like:
Excessive visual stimulation.

Sno’s box of tools resides on her beside table, with her chart of Zones and ideas for each section right beside her bed.

Her box contains:
A stretchy caterpillar toy.
Scented gel pens & colouring book.
A strip of soft purple minkee fabric.
Her iPod and noise-cancelling headphones.
A few stretchy animals.
A homemade visual sensory bottle.
A spiky foot massager.
Her Tangle.
A little pouch containing some Arnica healing balm for bumps & bruises, some cuticle cream for “flicky nail skin”, some homemade essential oil roll-ons (lemon myrtle & peppermint scents) and some pawpaw lip balm.
Soft eye-mask to shut out bright lights.
A few hair coils which Sno uses as fidgets for when at school.

What she uses depends very much on that moment, but all these tools get used regularly. On long outings or car-rides or school excursions a few will get chosen and packed into her small backpack, along with a water bottle, book and a snack. That way she’s always prepared and can self-regulate independently. Being prepared like this results in much fewer meltdowns, too, due to much less masking being necessary.

The Bucket Analogy.

All peeps have a bucket, right. Peeps who are neurotypical (non autistic) have an automatic variety, that empties of its own accord whenever needed.  Autistic peeps though, theirs aren’t of the automatic variety. So this means they need to take breaks throughout the day, and make conscious, intentional efforts as their day progresses to empty it themselves.  If autistic peeps aren’t given opportunities throughout the day to empty their buckets, or if they forget to – it overflows.

And when their bucket overflows: this is called a meltdown.


So what sort of things can add to an autistic person’s bucket? Well, it totally depends on the person!

It could be things like:

Itchy clothing.
Plans that change.
Meeting new people.
Music that is too loud.
Really hot days.
Really cold days.
New foods.
The smell of other people’s food.
Social exhaustion.
Hot dishwater.
Hot showers.
Strong perfume.
Being at work all day.
Being at school all day.
Being at kindergarten all day.
Going for long drives.
Going to new places.
Having to make a decision quickly.
Grumpy people.
Loud people.
Other people eating food.
Having a problem but not knowing how to talk about it or not being able to.
Being pushed to a deadline.
Being given too much information at the one time.
Having to sit still and quiet all day.
Background noise.
Light touching.

.. and the list goes on. All this stuff adds up. If we can consider that our autistic child, for example, has been at school all day, has had to be around new people with a change in routine and has had to travel home in a noisy car – it’s any wonder their buckets are overflowing by the time they get through the door – if they even make it to then!

This is why I will emphasise the importance of preventative breaks.

What I mean by this is regular opportunities for our autistic peeps to chill out, recharge and recalibrate.

This can be done through a multitude of methods, all of which will depend on the individual’s sensory profile and preferences.

Maybe it’s lunch alone.
Maybe it’s colouring in.
Maybe it’s time on the iPad.
Maybe it’s using noise-cancelling headphones.
Maybe it’s chilling out in a cubby alone, reading.
Maybe it’s not talking to someone as soon as they get in the door.
Maybe it’s not asking questions as soon as they get in the car.
Maybe it’s a crunchy snack, and a sticker book.
Maybe it’s a prior agreed-upon talk-time limit, and then it’s quiet time.
Maybe it’s playing computer games.

It really doesn’t matter what method it is, at the end of the day. But it’s about being compassionate and understanding.

Let’s be aware of each others needs. It really isn’t about whether you’re autistic or not, it’s about taking everything into account and being mindful and supportive of each other. Life is hard enough, consider the bucket analogy and help others. It isn’t rocket science.


Taking Stock: Summer, 2017.


I write a lot about my incredible family because they pretty much take up most of my life, and that’s okay. But today I thought I’d do something different and blog about me. Because I’m pretty awesome too, but I guess a lot of my individual personality gets somewhat lost in my blog posts about autism, because I’m not actually autistic myself.  So anyway, here’s a snapshot.

Making: Plans to yoga, menu-planning for this week’s dinners, gluten-free granola.
Cooking: So. Much. Food. Six months ago I’d go so far as to say I loved cooking but now it’s more like: WHAT? They have to eat AGAIN?!  Always with the food prep: buying (OK Cj does that, but still), washing, prepping, cooking… ughhhh.
Drinking: Cider. Apple & cinnamon tea, cold. Bulletproof coffee every morning. Lots and lots of water.
Reading: Living Dangerously.
Wanting: More art supplies, more books, new clothes that aren’t stretched and threadbare.
Looking forward to: Speaking at the Passage To Motherhood Conference this year (I’m doing a talk on breastfeeding after sexual abuse) and hopefully going away for a few nights with Cj solo for the first time since we became parents for my 30th in July. Also taking Raralilyo to the ballet for her birthday soon. Oh and Mexican for Cj’s birthday next weekend.
Considering: How many toys I can get away with donating so I don’t have to keep picking them up off the fucking floor.
Harvesting: My goals and intentions.
Wishing: We could afford new bunk beds for the girls NOW so I can finally get Beans out of our room and weaned completely (she’s down to 1 feed now).
Enjoying: Making time to hang out in nature. We live on the Sunshine Coast and are surrounded daily in beauty. I kinda think of nature as my own version of “God”, for what it’s worth, because even though I was raised Catholic I think the whole thing is a load of bollocks.
Waiting: For my next study semester to go back soon. I’m doing 3 subjects this semester and I’m simultaneously gleeful in anticipation and shitting my pants in apprehension.
Liking: The fact that I am in the final year of having a toddler home with me full-time… EVER.
Wondering: If I have the guts to apply as a model for a Body Painting Festival in a few months.
Loving: Hanging out with women.
Pondering: Whether we should sell the cot & old beds, or just donate them.
Listening to: Florence & the machine, Ed Sheeran & The Goo Goo Dolls, always.
Deciding: Not to buy into narcissistic behaviour. Breathe. Let go. It’s not about me it’s about them.
Buying: New undies. Thunderpants are the best!
Watching: Will & Grace re-runs.
Hoping: Cj remembers to fill out all the paperwork tonight.
Marvelling: At all the fucking laundry (which I won’t be folding).
Cringing: At the ever-evolving ignorance of small-minded dipshits.
Needing: New  vegan nail varnish.
Learning: That I matter, and I cannot give on an empty cup.
Questioning: What stuff we could leave behind if we packed up and moved away tomorrow.
Smelling: Lemon myrtle in the diffuser.
Wearing: No pants because it’s too hot.
Noticing: That Autumn is coming, my favourite season (maybe that’s why 3 of my four babies were born then hey?). I love the cooler change and I adore jean-and-boot weather.
Thinking: That I’m excited to find out who I am as I enter this next phase in my life, knowing there will be no more babies and almost over the shitty toddler stage (once we get through threenager-hood.)
Knowing: That her stuff isn’t my stuff.
Admiring: People who make time to look after their own needs despite the chaos going on around them. Getting: Some immune system building remedies ready. All the garlic.
Bookmarking: HIIT workouts, GF chocolate cake recipes and books I want.
Closing: Off the guilt and internal “I am not worthy” internal dialogue.
Feeling: Like I’m looking forward to bedtime.
Celebrating: That today wasn’t shit.
Embracing: The way I feel after I do scary stuff.



..and then I cried a puddle of happy tears.

My beautiful new necklace.

Up until now the whole veto-ing Valentines Day has worked really well for me. Partly because I like to push against mainstream practises cos it’s fun, and partly because I’m married to an incredible autistic man who doesn’t really *get* the concept of romance or the actual point of celebrating Valentine’s Day at all, really.  He is also pretty hopeless with remembering dates unless I write it on the whiteboard or schedule it into our shared digital calendar with reminders.

We’ve been together almost 11 years now and after about the 3rd year running of not receiving any card or gift for this silly day I kind of gave up on the whole thing and dropped expectations totally. But that’s been okay.  Because I am blessed enough to be married to a man who shows me he loves me in small ways, constantly. There hasn’t needed to be a big show or grand gesture because we are still very much in love and endeavour to make this known to each other all the time. Romance to me is in the way he folds laundry every night, does the groceries every week. Romance is the way he makes me my delicious coffee every single morning and the way he gets up at 5am with our little dawn-treader, no complaints. It’s the simple, random “I love you” messages he sends me throughout the day. It’s the way he picks up chocolate truffles for me at Aldi because he knows they’re my favourite and he loves me even though they make my arse bigger.

Anyway, I digress.

Today is just another ordinary day. Even though it’s Valentines Day. Except today it actually isn’t. Because a few days ago, whilst out op-shopping (one of my favourite things to do) I saw a beautiful black pearl choker and I sent him a photo of it and then thought nothing else of it.

Last night after we wrangled our four feisty girls into bed, we came out and sat next to each other on our couch and Cj presented me with a gift he had wrapped, and a card. A gift. And a card. Seriously!


Inside the card, it reads: “Dear Wife, Happy Valentines Day. I’m not good at remembering sentimental stuff. I’m sorry because I know it actually means things to you. I love you. I love you more as we grow together. You complete me & make me feel whole. Love Cj.”

So what was in the gift? Well I’ll tell you. Yesterday afternoon Cj text me to tell me he was running late because he had a meeting with his boss. Righteo, I thought. Whatever, he’ll still be home sooner than he normally would as he was on an early shift this week. Turns out he wasn’t at a meeting at all. He was at the op-shop, where he was showing the grannies who volunteer there the photo I had sent him of the necklace. That necklace was inside the wrapping, along with a box of my favourite chocolates (Alter-Eco salted caramel, incase you’re wondering) and there was a card, with butterflies in it. I don’t think it could be more perfect.

Yeah, I cried. I cried happy tears. Because I was so touched and it was all so thoughtful. And so unexpected.

I really fucking love that man.

Happy Bullshit Love Day, everyone. I hope you embrace the unexpected.


Talking and Communicating are not the same thing.

There’s a reason I struggle with the terms “high functioning” and “low functioning” autism. A lot of this has to do with how autistic traits may appear to the outsider, and how they actually  are for the autistic individual.

People see a child labelled as autistic who is talking with others, giving positive & open body language and fulfilling daily tasks and they assume that they’re a little less autistic than an individual who is non-verbal or who needs support with daily tasks.

This is simply not the case. And it is actually quite judgemental and harmful to assume that it is.

There’s really no need for these “less” or “more” autistic labels. Because they are needlessly divisive. It is all autism and every individual with the diagnosis presents uniquely. Just because you don’t see someone struggling doesn’t mean they aren’t. Autistic people are super clever at camoflaoguing their struggles and these happen silently:

You don’t see their anxiety.
You don’t see their sensory struggles with noise, texture, smell or taste.
You don’t see their social overload.
You don’t see their need for control, organisation & perfectionism.
You don’t see how they hold it all together when out and then meltdown for hours and hours once home.

All these struggles still exist however, but they aren’t always obvious at all to onlookers.

Which brings me to the topic of today’s post: communication.

Just because an autistic person can string sentences together, remember the names of people, places and objects and can have face to face verbal interaction with others doesn’t mean they don’t have trouble communicating. Often they may have trouble with receptive speech, identifying & expressing feelings and emotions and working out the nuances within social conduct – the “grey” areas, like sarcasm and metaphors.

Sno lately is struggling with the process of having a thought or a problem/worry in her mind, and getting that thought or problem expressed verbally. This is for both at home and school. When I asked her how it makes her feel, she said it’s like this huge grey jumble of “stuff” in her head and she can’t work out which is which and what is what – it’s all mixed up and tangled. Basically, getting her thoughts from her head into sentences in her mouth that make sense is really hard. So what tends to happen a lot at the moment is lots and lots of screaming meltdowns because she’s so frustrated and with all this frustration, she still isn’t able to express what she needs to. It’s a really tricky situation for everyone.

So we are going to trial a new concept, to help. Yesterday I bought her an empty exercise book which I labelled and I’ve encouraged her that anytime at home where she thinks of a problem at school, she needs to jot it down in her book with the day’s date and then when she gets to school, she needs to give it to her teacher. The contents of her book don’t need to be complex, just words that trigger her memory so she is able to slowly work through them with her teacher and support person at school in a quiet space. We are also going to access a few psychological sessions for her to aide in the process, too.

I’m hoping it helps, even a little bit. My heart goes out to her, and I only hope this simple idea can provide her with a small sort of anchor to keep her adrift and keep going, keep trying.

If you’re autistic and you experience this similar sort of thing, I’d love to hear from you. How does it feel? What do you find helps?

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