We're NOT all Autistic.

 

Oh but we're all a little bit Autistic."

Hmm, if you are Autistic, I'm guessing that you've heard that phrase or statement, or something very similar to it, at some stage from well meaning friends, family, colleagues or even from random strangers. Maybe even from a medical professional.

It honestly amazes me how often we hear this. At least once or twice, sometimes more, a week, someone tells me "oh but we're all a little bit Autistic." So far this week alone, that phrase has been said to me three times - once from a parent of an Autistic young adult. And depending on who says it, and how it is said, it really grates on my nerves.

Why does it grate on my nerves? Because we're not all a little bit Autistic.

Welcome to my unofficial TED talk on why we're NOT all a little bit Autistic.

At times when we hear that phrase, it's followed by, "but all children do that," or "I fidget," or something similar.

There are many Autistic traits, many of which can be seen during typical childhood developmental stages. For instance, toe walking. Babies and toddlers will often toe walk when learning to walk. But your typically developing child will outgrow toe walking. An Autistic child may toe walk for longer. Many Autistic adults toe walk.

Echolalia is another trait - the repetition of phrases or words. Listen to babies babbling. Often babies, and toddlers, will use Echolalia like speech patterns when learning to communicate. But a typically developing child will outgrow the echolalia speech patterns.

Fidgeting. Yes we all do fidget. And anyone who says that they've never fidgeted is telling porky pies. You might fidget because you're bored during a work meeting. You might fidget if you're nervous or anxious about an upcoming appointment. Fidgeting may look like tapping a pen or pencil, tapping your foot on the ground, playing with your finger nails, drawing random objects in the margins of your work books or diary.

For the neurotypical, ie non-Autistic, person, once you're out or away from that environment, the fidgeting stops and it no longer interrupts your day.

For an Autistic individual, stimming - aka fidgeting - is a part of their daily life. Every single day. Stimming is used to express emotions. Stimming is used to ground and self regulate emotions. Stimming is used as a tool to distract from the external over whelming sensory input.

For an Autistic person, stimming is a part of life. I carry sensory items in my pocket every single day just in case I need them. Up until recently, I didn't realise just how many times a day I use these items to self regulate my own emotions and to distract myself from sensory overload. And thinking back on it, I have always carried a small sensory item in my pocket during my adult life so far. One of those big aha moments.

Sometimes stimming is a welcome distraction. Other times, stimming can be detrimental especially if it is a self harming stim. For an Autistic individual, escaping from the environment does not mean that the stimming stops. Stimming is classed as a restrictive and repetitive behaviour, ie it occurs all the time and can impact their daily life.

I could go through all of the Autistic traits and criteria that are used to diagnose Autism, but we'd be here for days. So I'll move onto other reasons why we're not all a little bit Autistic.

If everyone was a little bit Autistic, the world be a much friendly sensory and social environment for everyone. Our world is set up for neurotypical individuals. Schools, shopping centres, attractions, hospitals, pretty much any place you visit, are not created with Autistic individuals in mind. Many of those places are a huge sensory nightmare.

"Oh but shopping centres can be very busy." Yes they can, especially around peak times throughout the year. But a simple shopping outing to buy groceries during an off peak period, can be socially and sensory overwhelming. For both my children, it's often the choices that are available. For example, buying a snack. They know they want a snack but there's so many choices. They may initially have a snack type in mind but then as soon as they see the other choices, their brains go into overload. It's then not a simple choice, and we'll often walk away with no snacks and with children who are feel overwhelmed and bombarded.

If we were all a little bit Autistic, the world would be much more inclusive of neurodiverse individuals. And let's be completely honest, the world really isn't truly accepting of differences and therefore not truly inclusive. Often in workplaces, Autistic individuals have to request and justify why they need accommodations. If workplaces were inclusive, Autistic individuals would not need to justify why they need certain accommodations simply to do their role.

If all children were a little bit Autistic, education settings would be created to suit all learning types. This definitely doesn't occur. As it is, all children (regardless of neurotype) learn in a different way, yet learning materials and assessments are standard for all. Individual Education Plans (they may have a different term depending on where you live) are created every school year to assist Autistic students to access a quality education that suits their learning style. And unfortunately these IEPs aren't always suited to the students changing needs.

None of things exist for Autistic individuals.

Autism is a neurotype. You either are or you aren't Autistic. It's not half and half. An Autistic individual doesn't choose when and where they're going to be Autistic.

It isn't a compliment to tell an Autistic individual that everyone is a little bit Autistic. Saying this implies that you are discounting everything that the Autistic individual has gone through to gain the diagnosis. You're discounting their struggles that they may hide every day. You're discounting the affects of Autistic masking. You're discounting the efforts that the Autistic individual maintains to navigate their world.

So please, please stop telling Autistic individuals that "we're all a little bit Autistic." Because one day they may respond with, "and we're all a little bit ignorant, let me re-educate you!"

And if you think you are a little bit Autistic, go and get an Autism Assessment done. Then you may just realise that no, we're not all a little bit Autistic. Because gaining an Autism diagnosis is another barrier for many people.

What the hell????

 

Now this could potentially blow up in my face, but you know what, I'm over people trying to silence others because "I'm Autistic and I know best."

Every time, I'm really not exaggerating, I go onto the various social media platforms, there is yet another post in which Autistic individuals are belittling others, sometimes it is towards neurotypical individuals, other times it is towards Autistic individuals. And the reason is always I'm Autistic and I know best." You know what, I call bs. 

I am Autistic. I have always been Autistic but didn't realise until after both my children were diagnosed as ASD. I always knew that I was different but didn't know how - I didn't fit what some medical professionals say Autism is. After both my children's ASD assessments, (and it was confirmed by those who assessed by children,) I met all of the ASD red flags in my own way.

If I didn’t advocate for both my children, and I will continue to do so until THEY (and no one else,) tell me that they are confident enough to self advocate, who would have advocated for them???

Too often prior to both their diagnosis, and even now years after their diagnosis, medical and education professionals dismissed their struggles because "they don't fit what people think Autism is."

If I didn't advocate for them both, they may not have been accepted into the NDIS. They may not have received the assistance at school. 

Parents do know what is best for their children. Sure listen to Autistic adults, read books - there are some brilliant books out there, - find social media pages to follow - but ultimately take the advice and use it how you want to. Try the suggestions that you read about, if they don't fit you or your child, try something else.

Every Autistic individual is just that, an individual. We share similar traits but that is it. What works for one Autistic individual is not going to work for the next.

One Autistic individuals lived Autistic experience is their experience.

My lived experience as a late diagnosed Autistic adult is my experience. My experience is different, but very similar, to my children's lived experience. My husbands lived experience as a late diagnosed ADHDer, is his experience.

Every Autistic individual, child or adult, is unique.

Instead of telling, no bullying, people into doing what you say because "you know best," interact respectfully and help each other out.

Why we need space!

Quite often after both little superheroes have had big days, either at school or if we have gone on a family outing, they will need space and time to decompress. The sensory, emotional and social overload can, and often does, take a huge amount of physical, emotional and mental effort. And the combined overload takes a toll mentally, physically and emotionally and can leave an individual feeling completely exhausted.

Having Henry to assist L is an immense help but both little superheroes still need to decompress in their own time and in their own spaces.

Every individual has their own coping mechanisms, and the little superheroes are no different.

Since having Henry placed with us, L will almost always go straight to Henry and give Henry the commands for laps and overs (deep pressure therapy,) or just lay on the floor getting Henry cuddles.

We give them time to chill out - L has a huge cardboard box that he and Henry squeeze into, either to play on a device or just to lay and have cuddles. O will usually lay in her room listening to music. Depending on the overload for the day, really depends on how much time they need to chill and just be.

Once the little superheroes have self regulated, they will often come and seek us out for cuddles. Going to them too soon, can make their exhaustion worse.

Often parents, and/or carers, will ask their children or loved ones, well meaning and well intentional questions about their day. Questions such as "how was your day?" or "what did you do today?" or "did you have a good day?" These questions may make individuals who are already feeling overwhelmed, feel even more bombarded and/or bewildered as questions such as these are very broad.

How was your day? It is still day, so I don't know yet.

What did you do today? You know what I did today, I went to school/work/whatever activity was planned.

Did you have a good day? Can you define good? I didn't get into trouble at school if that is what you mean so that is good, but I felt overwhelmed by my anxiety so that wasn't good.

Unless the little superheroes begin talking with us about what has happened to cause them to feel overwhelmed, we leave the questions until dinner time, This way, part of their daily routine is to talk about the good things that happened.

Obviously if either of the little superheroes want to talk before dinner, we talk. Letting them take the lead, when they are feeling less overwhelmed, usually means that they will both be open about what is causing them distress.

At dinner, we focus on the good things. Talking about the day in a positive manner makes the world of a difference. We will usually get everyone, including us, to say one good thing that happened at school/work that day. And when we do ask questions about the little superheroes day, we ask focused questions based on what we know that they have been doing for the day.

And most importantly, if either of the little superheroes become overwhelmed, we provide them with support. If an individual becomes overwhelmed from sensory or emotional or social, and so on, inputs, they just need and want to be supported.

Autism Masking

Let's talk about masking, in particular Autism masking.

But first, everyone masks at one point in time. You may only show your work side of your personality in the workplace - a form of masking. You may hide your true feelings about something so as not to upset others - again masking. You may be emotionally and mentally exhausted but don't tell people around you because you don't want to worry them - again similar to masking.

You weren't taught how to do these things, it just happens. How exhausted at the end of the day do you feel?

Now imagine masking every inch of your being, every single day. 

Autistic individuals, at times, realise that to fit in with their peers, they have to mask their own traits. They may realise that if I have an emotional overload then my peers will judge me, I may get into trouble.

Masking is detrimental to an Autistic individuals emotional, mental and physical well-being.

You may see one behaviour, extremely well behaved compliant individual in one setting, and the complete opposite in another.

Please, please understand masking. Don't dismiss the individual, or their family. Take the information on board and ask, how can we assist.

Autistic individuals are expected to fit into a world, a system, that isn't designed for them. Rather than expecting them to fit in, make accommodations.

Provide an Autistic individual with the support so that they feel comfortable to unmask.

Sometimes, sarcasm is the best way to respond!

There are times in anyone's life, that the best way to respond to questions or statements is with sarcasm. Over the last few years, I've become quite versed in interpreting how questions are asked. 

If the person asking the question is genuinely interested in learning more about Autism and our journey, I will take the time to politely correct them and education them about Autism.

And then there are the people are just down right rude and obnoxious. And that's when one of the below responses will slip out! Oops, sorry not sorry!

[Oh, you're neurotypical? So to what degree are you normal?

 Are you slightly normal or very normal?}

["Their struggles are all in their head."

You're right, their struggles are in their heads, Autism is a

neurological difference. I didn't realise that you had

x-ray and MRI vision to be able to see their differences.]

[Random person: "They don't look Autistic."

Me: Oops, my bad. I haven't taught them how to look Autistic yet.

Can you show them because clearly you know what Autism looks like.]

[Random person: "They aren't drugged are they."

Me: If you are referring to medication, yes they do take medication. At this moment in time,

they require medication to keep their anxiety at bay so that they can

learn how to self manage their severe anxiety.

Are you drugged for your stupidity?]

[Random person: "There's no such thing as Autism."

Me: Actually Autism does exist. And while we're on the subject of things that

don't exist, I didn't believe that there were walking adverts for contraception

but here we are.]

[Random person: (insert unsolicited advice here..)

Me: excuse me for interrupting you, but here's some unsolicited advice

for you. STFU and ping off.]

[Random person: "They'll get better when they are adults."

Me: Yes they will get better. Better at using sarcasm to deflect comments like yours.

Autism doesn't end at 18 years.]

[Share this on your profile is you know, or are related to someone,

who is an idiot. Idiots affect the lives of many. There is still

no known cure for stupidity, but we can raise awareness.

93% won't share this, many because they're too stupid

to know how.]

[Random person: "Don't you wish that there was a cure for Autism?"

Me: No. Why would anyone want neurodiversity to disappear? But did you

know that there is a cure for ignorance?]

[Random person: "What's wrong with him?"

Me: Absolutely nothing, he's neurodiverse and extremely happy.

What's wrong with you?]

[They don't look Autistic you say? I apologise, next time

I'll make sure that they're wearing their Autistic clothes!]

[Random person: "Don't you wish there was a cure?"

Me: A cure? You know that there is a cure for stupidity and ignorance, it's called

talking to and listening to Autistic voices.]

Autism Awareness and Acceptance 2022

It's April, which means it is Autism Awareness Month.

But you know what, we don't need more awareness. Acceptance is what all Autistic individuals want. We want to be accepted for who we are.

April the 2nd is World Autism Day.

Please be accepting of those individuals who are different, regardless of whether you know that they are Autistic or not.

We have been on this journey for almost 10 years, as we knew that L was different from the moment he arrived Earth side. Officially, our families Autism journey began in 2016.

Your view of the world changes when let yourself view the world through another's perspective. Both O and L view the world in their own ways. And we wouldn't have our family any other way!

Throughout the month of April, I am going to share ways in which you can show a little more Autism Acceptance. But acceptance shouldn't just be in April, it should be year round.

[Raising Autism Awareness 101

Autism has no look. Every individual is unique.]

So how can you show more Autism Acceptance?

If an individual tells you that they are Autistic, don't question their diagnosis.

Autism has no look. Too many times, and far too frequently we hear "they just don't look Autistic."

By stating this, or something similar, you are not helping. You are in fact questioning their every being.

It can take families time to actually get an Autism diagnosis, and when you question the validity of the diagnosis, it can be a huge kick in the guts to them.

Don't question, just accept and open your eyes as to how they view the world.

 

[Raising Autism Awareness 101

Autism is for life. Autism does not magically disappear 

when an individual turns 18.]

Autism is for life. Autism doesn't disappear at the age of 18, but unfortunately therapy services for Autistic adults can be more difficult to find and access. An Autistic individual won't get better, life at times doesn't become easier for the individual.

Some new Memes

 Who loves a Meme? Here's a few that we've posted on our social media profiles!

[If an Autistic person is non-verbal, still include them in conversations.

You may be surprised at just how much they are taking in.]

[Meet your child where they are developmentally here and now,

rather then be concerned by where medical or education

professionals say that your child should be.]

[Stop and admire the little things in life,

the tiny details that we miss through

being busy, because these can be the most

wonderous things.]

[Be so completely yourself that everyone else

feels safe to be themselves too. Unknown.]

[Normal is not a goal for me.

Normal isn't a compliment.

Normal is too much like playing tetris,

fitting in for the sake of fitting in.

O, 12 years.]

[Neurodiversity is....

A different way of thinking.

A different way of processing everything that an individual

sees, feels and hears in th3e world around them.

A different way of communication ones needs,

thoughts and wants.]

[Remember to choose the battles that you want to fight.

But also, for your children sake,

fight the battles that need to be fought.]

Furry Friend Memes

 Hands up if your have a four pegged member of your family?? These are all in celebration of those furry members of our family!!

Assistance Dog 101: What NOT to do!

As I write this, Henry has been part of our family now for just under three months and he is making such a huge impact.

When we are out and about with Henry in his coat, the majority of people who approach us to either admire Henry or ask questions (often both) about Henry, are extremely respectful. But unfortunately there are a few not so respectful people who at times deliberately overstep the boundaries. There are also people who are trying to be respectful but aren't sure about what they should or shouldn't do when interacting with an assistance dog.

So here are a few tips of things NOT to do when you see an Assistance Dog - regardless of the type of Assistance the dog provides.

Please do NOT tell your child just to go and pat the dog because Assistance Dogs are always friendly. Yes, assistance dogs are meant to be friendly (that is part of the public access test assessment,) however this doesn't mean that you should just send your child over for a pat. Always ask first.

If you're an adult, don't pat the dog. There's a badge on Henry's jacket that says "working dog, do not pet." The badge is there for a reason. Ask before you pat the dog. And if the handler says no, they've said no for a reason. Respect their wishes. Before Henry was placed with us we made the decision that if Henry was in work mode and assisting L by deescalating a meltdown or disrupting a self harming behaviour, we wouldn't allow people to pat Henry. However if people approach us and Henry is not directly assisting L, then as long as they ask first, pats are okay but Henry has to do a skill to earn the pat.

Please do NOT give the dog a treat, ie some of the food you're eating. Number one, Henry isn't allowed human food. He eats good quality dog food, twice a day. Number two, Henry is trained to not to beg for food at all, or even sniff at food that might be on the floor. This is a distraction for the dog when they're working and depending on what you're offering, could make the dog unwell.

Please do NOT go and start to take the halti, harness, leads and so on, off the dog, because you think the dog looks uncomfortable or because you don't believe the dog needs it. The dog is a working dog and is wearing the halti, leads, jacket and so on for a reason. And yes this did happen to us when Henry was in work mode, the elderly woman's reason was because she thinks dogs need to be spoilt. If you want to spoil a dog, spoil your own pet. The halti is uncomfortable for Henry (he will take any spare opportunity to take it off,) but it does not hurt him.

If the handler says that you can pat the dog, pat the dog when they say to and where they say to pat the dog. When in work mode, the only person who can give Henry pats at any time is L and Henry doesn't have to "earn" the pat. Anyone else, Henry has to do something, like a trick, to earn the reward and even then, the pat is on the back of his head. If you pat his face or allow him to lick your hand, he's going to think you have food. And then he's going to go seeking pats. This makes it more difficult for me as the handler, to keep Henry's focus on the job.

Please do NOT try to give the dog commands that you use with your own dog. Working dogs have set commands that they are used to. If you start giving other commands, the dog will become confused and lose focus. While working, the dog needs to stay focused on their handler (and in our case, also on L.)

If you are walking your dog, or have your dog with you, please do not let your dog approach the service dog, no matter how friendly you think your dog is. While a service dog is in working mode, they need to be focused on their person and not distracted by other animals. While in training, Henry (and I'm sure other service dogs are the same,) was given dog distraction training. It is extremely distracting for Henry when another dog is brought over to meet or interact with Henry while he is working.

And finally, if you're not sure what you should or shouldn't do, just ask. When Henry is directly assisting L, we may not answer or we may sound abrupt as we need to concentrate on Henry and L. At other times, we're always up for a chat about Henry and how he assists L.

Autism Acceptance and Awareness 2020

April is Autism Awareness and Acceptance Month world wide but unfortunately, 2020 had other ideas this year. Usually there would be public events held to celebrate all things Autism. This year, we were all housebound and April seemed to both fly and drag by at the same time.

It's now July, I don't even know where May and June went, and I'm only just getting around to posting these memes that I created for our social media pages!

So without any further ado, here's just a few of the memes from April!

[It's April! Know what that means?? Autism Awareness and Acceptance Month! 

But Autism Awareness and Acceptance needs to be a year round occurrence.]

[Autism Lesson 101

Autistic individuals do not have a lack of empathy.

We may struggle to understand and interpret our own and the emotions of others, but that doesn't mean that we don't have empathy. I feel empathy towards others, and at times I am over empathetic in wanting to help others.

O, 11 years.]

[Autism Masking

is exactly what it sounds like.

An Autistic individual may either consciously, or subconsciously, put on a metaphorical mask when they leave their safe place, ie home, each day.

Masking takes a lot of emotional, mental and physical energy to the point that when they arrive back at their safe place, they may explode in a meltdown or they may shutdown.]

[Autism Lesson 101

Communication can be difficult for Autistic individuals. Verbal speech, hidden non-verbal cues, body language, there are so many aspects of communication to interpret.]

[Rose are red,

Autism is a ride,

Will you come and join us?

We're the best tour guides!]

[Autism Lesson 101

Autism is a spectrum.

No two individuals are the same. They may have similar traits in some areas, but they will differ in others.

O, 11 years.]

[Autism Lesson 101

Sensory Processing Difficulties can affect ALL of an individuals senses....

Sight, Hearing, Taste, Touch, Smell, Interoception, Proprioception and Vestibular.]

[If you've met one Autistic person ....

then you really should go out and meet a few more Autistic people.

We're all pretty Ausome.

Just saying!]