Category: Autism (page 1 of 10)

NOT Your Usual Sensory Shop.

A while ago I was contacted by Bri from Way of The Cactus, asking me if I would be willing to trial and review some of the awesome, eco-inspired sensory products her company stocks. As it happens, I’d actually seen the products before in my online travels and was already interested in them – so of course I snapped her up on the offer. Anyone who knows me well will know that I really can’t stand mass-produced short-lived plastic junk and try to avoid buying it where possible (with Lego and Magnatiles being the exceptions). I’m way more of a fan of quality versus quantity, and I have to say that Way of The Cactus completely tick all the boxes here.

*I will say that the review below is my opinion only and even though the products were supplied to me – my review is honest and completely my own.*

So, anyway.

Way of The Cactus is a business run by two families in Brisbane, comprising of an Occupational Therapist, artist, social worker and academic. They are also all autistic and between the founders Leif, Leia, Julies and Bri – a wide range of neurodivergence is encountered including autism, ADHD, dyslexia, anxiety and depression. This really appealed to me because I believe that the people who know the most about autism and sensory needs are in fact the autistic members of the community.

The company was started because the founders were spending a lot of their time searching for sensory products that not only looked beautiful and were effective, but were ethically and sustainably made. And so when Way of The Cactus found their beautiful items, they wanted to share it with others with similar values.I can really relate to this because being a mother of autistic children who have a wide range of sensory needs – I kinda get sick of chucking out plastic crap that only serves their purpose for a little while before it breaks. I hated that I was adding to landfill after each and every time something was broken. And despite not being autistic myself I can really appreciate how much nicer handcrafted items feel compared to their cheaper, tackier counterparts. Honestly, there was no comparison.

I was sent four items; and they didn’t disappoint.

First up, the Rubble Lariat is a gorgeous, unique item of jewellery that feels good and looks good on.  I love that it can be altered in the way it looks depending on how it is tied or arranged. I’m actually eyeing off a pair of the earrings from the producer of them now, too. Beautiful, beautiful jewellery.

 

Sno absolutely adores the Comfort Egg and pilfered it right out of my hands when the package arrived, claiming it has her own. It fits comfortably inside the palm of her hand and she finds it really relaxing to turn it over in her hand, and also loves to rub the soft wood against her skin. She says it smells good, too. It now lives inside her handbag along with her noise-cancelling headphones, phone and essential oil – this is what a sensory kit looks like for my 10.5 year old. She loves that it is small and unassuming.

 

Papagirltribe was sent an Organic Crew tee. He’s worn it at least three times a week since it arrived, so safe to say he approves. It is soft, non-clingy and he says he likes the unusual design on the tee. I have to say I think it looks funky!

Wilding pilfered the Gum Nut Spinning Top and although it’s hard to get an action shot of it, I can say that once she started spinning it she didn’t stop for a while! Watching it spin was clearly soothing and relaxing, and it is hardy – I know it isn’t going to smash within a short space of use.

Now, onto the good news for you – my readers. Way of The Cactus has kindly offered GirlTribe readers a 15% off discount code through the month of August and September. Simply enter in the code “GirlTribe15” in the discount section of your cart at checkout to redeem it. They ship worldwide and offer free post on orders over $99.00. Please get behind this awesome company and give them your support if you are after beautiful, sustainable sensory items that will last a long time.

Happy shopping!

Why We Took A Break From Therapy.

It’s been an interesting journey parenting four daughters, three of whom are on the spectrum. Starting with the major onset delay in accessing support for Sno due to her later diagnosis, then positive regular OT sessions for Wilding in our home environment and now therapy with Beans.. we have definitely approached therapy differently for each daughter.

 

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Over the years it has become clear to me that, like with most things in life, there really is no one size fits all when it comes to the effectiveness or purpose behind accessing therapy for autistic children.

Maybe it was that Beans is my fourth child, third autistic daughter and I have my head fully grasping her needs myself without having to pay a professional to tell me what she needs or what her strengths or weaknesses are. Maybe it’s just that my view of the point of therapy has changed. Maybe it’s both. But Beans was diagnosed last year and over the last 8 months she’s only been to a few sessions of Occupational Therapy, and here’s my two main reasons why:

  • Therapy appointments can actually be counter productive.  Waiting rooms are no place to spend a childhood and being shuttled back and forth to appointments is draining and tiresome.. for everyone involved.  It’s also pretty full-on for autistic children to get to know and trust strangers and be their true selves around them. This is something that takes time and can be pretty confronting. And most importantly;
  • Many therapy models try and alter a child to suit society’s expectations or interpretations of “normal” and “acceptable” and over the years I guess.. I’m just not sure whether I give a shit about my kids fitting into the few limited moulds on offer. The truth is, there is no “right” way to behave and my girls have really taught me, and continue to teach me – that they dance to the rhythm of their very own tune, and that’s okay. It’s more than okay in fact, it’s awesome, it’s brave, it’s beautiful and it’s something I want to encourage – not stifle or change. Having the courage to be who you are in a society hell-bent on insisting everyone buckle under pressure and confirm is an incredibly admirable thing.

So whilst I do believe some types of therapy and some situations are warranted and very helpful, I’m just not sure it all is. Not all therapists are the same, either. I have found it helpful to get sensory profiles done for my girls so I can address and understand their sensory needs and provide them with the types of input they like, but once I have that – I do all the ongoing support at home. Our house is basically equipped like an OT’s office, it’s pretty amusing. Therapy in the form of psychology also is very useful in terms of teaching my older autistic girls how to handle their emotions and live with their anxiety, encouraging them ultimately to learn to independently self-regulate by understanding and being aware of their triggers, too.

 

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But Beans and I have taken a break. And so we continue to work on core-strengthening at home for her hypo mobility and low-tone, we go to the beach for sensory play, we climb trees, we incorporate fine motor and gross motor strengthening fluidly into our every day doings in channels she enjoys. There is no force, there is no push to conform, there is no rewards or bribery.

In finding our flow, my girls are free to be who they are, embraced for their quirky ways and encouraged to be fully and wonderfully their true selves.

 

A tool to ease separation angst..

Wilding has often struggled with transitions. What I mean by this is; stopping one activity and beginning another, getting dropped off to places and going somewhere new. Tonight I’m sharing an idea that we have come up with that I believe will help a lot with these struggles in such a simple way.

At a few months off age six, Wilding is a really social little sprite, she loves people and making friends so staying behind or not going out has not really been an option that she’d choose. She loves school, her friends and her grandparents but has always found the “leaving” part to be tricky. One of the best tools for situations like these that we have found,  has been to give her a little laminated photo of Cj and I. Because she’s such a visual little creature, having a photo of us with her offered her immense comfort. At kindergarten the photo would live in her special box and at school so far it has lived in her tidy tray.

However, it can be hard because there have been situations where she has needed a little extra comfort and visual reassurance but it wasn’t there. Sometimes she’d request to have items of clothing of ours with her, or jewellery pieces – which is fine.

But today we came up with an awesome tool that can be with her whenever she needs. We bought her a little silver locket of her own. Inside we placed two tiny photos of Cj and I that we has printed off.

This means Wilding now has us with her wherever she is. Anytime she is not with us and gets pangs of anxiety or misses us, she can look at the photos of us from the locket that hangs around her neck and be comforted. I especially hope this will help her at night-time with her sleeping, too.

We gave her the locket this afternoon and she’s positively beaming now.  It really is the little things sometimes.

It’s Time For An Inclusive Autistic Diagnosis Criteria.

You know, I really wish there wasn’t such a thing as “male” or “female” autistic traits. Why can’t they just be called “autistic traits”?

Let me explain.

If there wasn’t such a gender division within the autism diagnostic criteria, my husband wouldn’t have had to wait until the age of 30 before he received his diagnosis. And my six year old daughter, now ten years of age – wouldn’t have had to wait until she was six to get hers.

Why?

Because my husband, the incredible man that he is – presents with many “female” autistic traits. But last I checked (which was this morning), he’s very much male. So gender really has nothing to do with it.

He does not have loud melt downs when he’s overloaded. He shuts down, withdraws and goes inside himself instead.
He observes and mimics others in social situations, putting on whatever “hat” is needed at that given time.
He will keep his struggles inside and only let them out when he’s in a safe, familiar space.

However, these are all regarded to be “female” autistic traits. So why is there the need for the divide???

It is all just autism. We sorely need a diagnostic system that assesses traits from a whole perspective taking into account all types of presentation, rather than only certain according to the private parts of the individuals.

Females need to stop having their diagnoses missed because they’re hyper intelligent, verbal, outgoing, social and epic mimics – and males need to be recognised for their disability even when they’re all of these things too.

Being quiet
Being outgoing
Liking people
Preferring solitude
Loud meltdowns
Internal silent shut downs
Verbal
Non-verbal

…. I could go on. Seriously, enough.

Please, let us include all of the autistic traits in the future diagnostic manuals, so that autism isn’t such an invisible disability anymore, and our loved ones can get access to the support that they need. Having an autistic diagnosis has a great impact on an individual’s identity and sense of self, and this isn’t something that should be withheld – definitely not when it hinges on a criteria that changes depending on what is between an individual’s legs.

I really just struggle to what gender has to do with it.

 

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“Help! It’s cold and my kid won’t wear clothes!”

I’ve noticed the above phrase is something that keeps popping up across various groups and communities online, so I thought I would write a blog about my take on this topic.

So okay, I get it. It’s like 9 degrees outside and your child is refusing to put on pants or wear socks or a jumper. They point blank just won’t, and you’re worried about their health.

The thing is..

Firstly; it is a well known fact that autistic individuals have unique sensory systems of their own which mean they experience different types of input in their own unique way. Some don’t feel pain, others feel pain acutely, some have issues with clothing, others don’t, some love to jump, others don’t.. it goes on and on. Wearing clothes is more often than not due to the child’s very own sensory preferences. Maybe they just actually don’t feel the cold. Like, seriously. Fancy that! So they see no need to wear layers as the cool weather doesn’t personally affect them. Or maybe they don’t like the way the warmer clothes feel on their skin, even though these clothes may feel fine to you. Wool can be itchy, loose clothing or those with tassels can be annoying and tickle, fleece can make them sweat, perhaps they feel restricted and maybe wearing certain clothes actually hurts them. It isn’t your body, you aren’t feeling it yourself so you don’t get to force the point.

I get that you’re concerned, because their reaction to the cooler weather isn’t the same as yours. But that’s where this next point comes in..

Secondly; there is the important issue of consent. This is to say, that every child is in control of their own bodies and their own choices regarding their body. This is something that I often see discounted when it comes to autistic kids, and something I find very alarming. I have read of other parents forcing their children to wear warmer clothes, physically holding them down and forcing these warmer clothes onto their children. This is not okay. Every child has the right to feel safe and respected in their body and have their body and personal space respected by others. Forcing clothing that others deem acceptable, simply due to different neurology – is unacceptable. You might not understand it necessarily and you may not feel the same but autism means individuals think, feel, see and process things differently. Consent still applies here.

So what can you do? Well, here are a few approaches that may help:

  1. Educate your child about the weather. Create a visual weather chart with pictures and removable indicators: cold, rainy, hot, windy. Provide examples of suitable clothing choices for each type of weather. Play games about the weather, read books about the weather and pay attention together about what clothing options might be better suited for the variety of seasons.
  2. Encourage tactile exploration and play in a no-pressure, fun environment. By this I mean, offer opportunities for your child to get messy with their hands and body. A lot of the time clothing refusal is due to tactile hypersensitivity – so the things that touch our skin have a greater effect. By playing with a variety of sensory experiences, it can gently acclimatise and build tolerance for the body. I’m talking slime, sand, rice trays, play doh, finger painting, cooking, gardening, ooblek.. you get the gist. This book is a fantastic resource for ideas. Make it fun!
  3. Give the child some control. You can do this by taking them with you shopping, encouraging them to touch different clothes and exposing them to a variety of textiles. Find out what they like, find out what they don’t – and go from there.

And really, try and relax. Because at the end of the day it isn’t actually possible to catch a cold from the cold. Just make sure your child is getting a daily dose of vitamin D on their skin!

Have you seen my series of posts which explore the sensory system? Check out part 1 here.

 

With & Without: One Month Update.

It’s been about a month now since we made the decision to pull Sno from school and after a period of deschooling, homeschool her instead. After many many years fraught with anxiety and struggle it wasn’t a decision we made on a whim at all.

I’m so happy to report that our home has been like a haven since Sno has been at home full time. She has seriously been a different kid.

Let me explain.

 

With school, Sno had minimal tolerance for exercise. Any small amounts of physical exertion quickly tipped her from stimulated to overstimulated and then fast escalated into meltdown.

Without school; Sno actually asked me the other day to go for a bush walk. In the last month we have been on at least 4 bush walks together and I have even found her doing skipping and jumping on the trampoline spontaneously which hasn’t then led to meltdowns immediately.

With school, Sno would be arguing with pretty much everyone as soon as she got home.

Without school, Sno is actually laughing and getting along with her sisters.

With school, Sno was not happy. I actually can’t remember a time I saw her laughing and smiling.

Without school, Sno is smiling and laughing and finding joy in her every day.

With school, Sno would overload into meltdown from noise in no time at all.

Without school, Sno has the tolerance for noise to be able to even enjoy listening to music.

With school, any screen time at home meant S would fast get overloaded.

Without school, Sno is using screen devices regularly as part of her learning and daily life without getting overloaded and she’s loving  it.

With school, Sno had minimal social reserves left at the end of the day and would avoid interactions outside school hours.

Without school, Sno is actually asking to connect with peers and is requesting time being spent with others.

With school, Sno was unable to effectively communicate her wants and needs to others, instead resulting in immediate meltdowns.

Without school, Sno is using her words and is able to ask me to stop doing something or telling me she needs to leave, or that she needs help.

 

Basically, it’s like her system has been completely reset. And it’s purely because her primary environment has changed.

She has the capacity now to manage not only daily functioning really well, but she’s got joy back in her. Because we can control and moderate her environment now, she is no longer being pelted into daily meltdowns for hours and hours on end. She’s now finding things she likes to do, and is doing them, and when she can’t handle something she is able to stop immediately.

I’ve had people ask me how I’ll handle all the “extra work” of educating my child at home and all I can answer to that now is via a scoff of indignance. Because I can tell you right now that having my child at home full-time eliminates at least 90% of her anxiety,  the vast majority of her sensory triggers and it also ends all the back-and-forth following up and communicating her needs to the school, most of which have changed by the time we actually get to talk.

I’m just feeling awful that I put my incredible child through so much stress every day for so long. I feel bad that I forced her to fit into a mainstream model of learning which was completely the wrong fit for her. Asking that she dealt with six hours of school every single day and then expecting her to come home and function was just so selfish and ridiculous of me.

Nevertheless, it is what it is. Onwards and upwards we shall go, and we are all breathing far easier from the change. I’m just sorry we didn’t do it sooner.

After Ten Years; It’s Time for Some Happy.

Sno turns ten tomorrow. Ten years since she burst into our lives and made me a parent. I was admittedly completely unprepared, with no idea what to expect. Our beginnings were very rough; a traumatic birth which induced a double whammy of post-natal depression and post-traumatic stress disorder. I wish I could tell you all about her first six months but that would be lying – they were a complete blur to me. I was in a very dark place and her cries were often lost amidst the sea of dark thoughts. Eventually we saw the light, and together with the help from specialists I found my way out of the pit of depression and things got easier. We bonded, albeit later than I had hoped – but hey we got there.

I guess why I’m telling you this is because, Sno and I – we have had a hard road together.

around and around and around she goes

And it’s time for some happy.

After Sno got her diagnosis at age 6 (roughly 2.5 years before I began noticing real quirks), her schooling years have been a mixture of mostly tough times with a little bit of good in there. Now at the age of ten, after six years of formal schooling, I can say out of those six years she’s only had about 2 where she wasn’t completely miserable. That’s a long time for a child to be unhappy or struggling, despite support people doing their best to make things easier. That’s a lot of screaming meltdowns from a child who is unhappy and isn’t coping.

Last weekend we made the decision to withdraw Sno from formal schooling, and educate her at home.

I won’t be writing a post blaming the school, or the teachers, or the support people – because that’s not the case here. They have been wonderful. But despite the supports in place for Sno at school, it just hasn’t been helping. She has been keeping it all together during the day, and then the evening comes and she’s rendered mute and unable to express her thoughts or feelings, so overcome with anxiety that she has been unable to communicate. For the past six months every single day we have had to help Sno through roughly 3 hours of screaming meltdowns. Our house is tiny, so I’m sure you can imagine the impact that her upset has had on us as a family collective not to mention on Sno. That’s a lot of time for a child to be unhappy. It’s not okay.

I will mention here that the suggestion to homeschool is being fully supported by all the medical and health professionals involved in Sno’s life, as well. So this is a journey we will be taking with support from every angle. Which is so wonderful.

A week ago I told Sno of our idea to educate her at home and the look of sheer relief on her face, the way her body softened – just confirmed to me that it was the right decision. We will be taking the rest of the term off to deschool, with no pressure on any formal types of learning at all. The next few months Sno will be decompressing, relaxing and finding joy in her life again. There will be lots of time spent in nature, there will be a lot of time for her to read with the cats in her lap, there will be art therapy and Sno has expressed a keen interest in learning coding. The goal is to allow Sno to be able to heal so that she can be in a place to learn and take on new information. It’ll be slow, slow, slow.

Honestly,  I just want to see my girl’s spark back. She has been so flat, so jittery and on edge for way too long. After holding her in my arms on Monday night where she experienced a trembling panic attack we  just think she needs down time and time to heal. It’s absolutely devastating to see my beautiful, intelligent, amazing daughter so weighed down and so unwell.

 

Yesterday afternoon we were at the local reserve and she asked to take off her shoes so she could run around. And she did, she ran laps of the grassy area barefoot. There was giggling. So much giggling. Around and around and around she went, one foot in front of the other, at speed. She looked so free, so at peace. I want to see more of that. And I think we’re on the right track.

I Know This Little Empath..

…she’s five years old. I remember vividly the day we were in the car on the way to kindergarten. We passed by a bunch of trees that were being cleared and happened to stop at the traffic lights beside a mulching machine. The scream I heard from the backseat was piercing, ripping through my ears and sending a shiver down my spine.

She watched on, completely horrified as the trees were fed into the machine, trunks first, and then were spat out into the holding cart – now mulch.

“STOP!,” she screamed
“Why are they killing it?!??! They’re hurting her! Stop! STOP!,”

You would think I was making this up. I’m not. That day is forever etched in my memory, painting an accurate portrait of my little girl who feels so deeply. She cried for that tree for days afterwards, sobbing into her pillow about the loss of life and destruction of something so beautiful and perfect.

This is only one example of how I’d describe what living and loving an empath is like.

I could also tell you about the time we forgot her pillow behind at Stradbroke Island, and only realised too late. She had formed an almost personal connection to that pillow, she knew it’s shape and form and she was thankful for the comfort it provided her.

Then there was the time we went for a walk in a nature reserve nearby to our house after a big storm had passed and she was crying into her hands, shocked at the destruction which left trees uprooted and plants destroyed everywhere.

Pillows and trees, huh? I guess it sounds a bit ridiculous. But to my little super-feeling, incredibly intuitive and sensitive Wilding – that’s what life is like for her. She’s in tune with things that we don’t even consider to have feelings or much value at all, even.

The little empath I know is the one who is right up beside others when they fall over or hurt themselves, rubbing their back and quickly offering a hug as soon as she can detect pain for them. She’s the one who gets upset when others get upset, telling me she is bothered by their “hurting face” and she cries when other people cry because she connects to their sadness on a deep deep level.

What I would describe as “referred mood” or “mirrored mood”, my little empath takes on the moods of others around her – seemingly without even being aware of doing so. When I’m sad, she’s sad. When I’m mad – she’s mad. When I’m struggling, I can see she is, too. My husband is like that too. This definitely makes for some fun conversations at times, and some, err.. let’s call them, discussions. Picture me, being premenstrual and slightly umm, snappish, moody, dramatic? And then picture my husband behaving in the same sort of manner, without realising it. Yeah, I’ll totally admit to saying “I’m the one with PMS, not you!,” Hah.

I know many empaths in my life, and they all happen to be autistic. So that whole “autistics can’t display/possess empathy” myth is a whole heap of bullshit.

In my experience, autistic people don’t feel a lack of empathy – they feel the exact opposite. They feel all the feels, to a large degree. They take on the moods and feelings of those around them, like a big sponge. This can make life really intense for them and also their loved ones.

One thing I am conscious of doing when I see Wilding (and Sno, and Papagirltribe) mirroring moods is to reassure them that whatever mood I may be in, or others may be in – is not their fault, or their doing. I remind them it’s okay, and I reassure them compassionately that things will work out as they should.

And on the days where  my precious little Wilding is awash with emotions invoked from trees or pillows, I hold her space and allow her to process the world around her however she wishes to do so.

Because being an empath isn’t a curse, it’s actually a blessing. And it needs to be fostered with compassion, kindness and understanding.  Because it is very, very real.

Hey, Doctor – Here’s some advice for you about my child.


Recently we ended up in the ER with some unexplained pain for Sno and I have to say I was completely gobsmacked with the complete and utter lack of understanding surrounding autism from some of the health professionals. So I figured I’d break it down. I am well aware that there isn’t always ample time to put all these steps into place but more often than not, it pays to be mindful of them.

Here’s my list of tips for health professionals on how to best support patients who are autistic.

  1. Introduce yourself.  My child doesn’t know who you are, so a simple way of making her feel at ease is simply by introducing yourself. Don’t just come into the room and start questioning.
  2. Connect with my child first. Before you need to start any medical procedures or begin talking in medical jargon – make an effort to connect with my child and build trust. Perhaps you could ask how old they are, comment on their cool shoes or even show them your cool pen – it doesn’t matter what, but take a little moment or two, it helps my child feel at ease.
  3. Explain to my child what you need to do before you do it. Fear stems from lack of knowledge or understanding; hospitals can be scary places for children, autistic or not. But when you explain what instruments are for and how they work, the fear dissipates and you’re more than likely going to have a willing patient, rather than a scared and closed off one.
  4. Ask for their permission before touching their body. This again applies to all patients. Please do not touch my child’s body without their consent. Absolutely do not pull down their clothing without their permission.
  5. Don’t talk about my child with them in the room, as if they’re not there and can’t hear you. Asking me questions about my child that they could probably answer themselves just makes my child feel invisible. They deserve more respect than that. And finally;
  6. Get me onside. I don’t care how many years you’ve been in the medical profession or what kind of awesome doctor you are – none of that matters if you can’t treat my child with respect. Autistic children are complex and their issues may not always be clear to the outside looking in. So, if you want to help my child, you’ll need to listen to them and me. I know my child better than anyone else does, so you would do well to take my lead with how you approach her.

Small adjustments make the greatest impact. So maybe consider dimming the lights, turn the music off and taking a moment or two, if you can. Believe me when I say that a calmer child is more likely to cooperate and be helped by people they don’t know, so even though all of this stuff may seem like a lot of “work”, it’s worth it. Let’s all work together, hey? We all want the same outcome after all- a happy, healthy child.

 

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.

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