You can’t preempt everything…..

So……… this is not a regular trip report.

We just got back from our weekend away in Melbourne, which was interesting to say the least….BUT the ‘interesting’ had nothing to do with Touristo, or the Princess for that matter.  Anyone who follows our Facebook or Instagram stream would see that Touristo and the Princess were complete champs.  He managed the plane like a boss on both flights, and the issues we encountered had nothing to do with him.

The start of the trip was as planned.  The flight down was amazing, we went to Sea Life Melbourne, St Kilda, rode the trams, walked through the city and I even had some time to have high tea in the lounge.  Then we found ourselves in somewhat of an intense situation where I was responsible for ensuring someone else’s personal safety.  As a result Touristo got dragged around the streets of Melbourne totally confused but compliant, with my husband and I crisis managing and the Princess completely confused but just getting on with it.  I could not be more proud of my children if I tried.  They were freaking champs in a totally unexpected situation that they couldn’t possibly begin to comprehend.

By the time we sat down to have breakfast on the last morning, and also pack our bags to return home, Touristo was acting a little bit out of character.  I put this down to the trip not going the way I had planned.  I had planned on getting out and about more, getting more sleep and sightseeing.  Instead we spent a big chunk of the weekend weaving through the streets on foot, and being holed up in the hotel waiting for people.

So we finished packing, made our way to the airport and boarded our flight which was uneventful.  Next step was finding our car and driving home……which was also uneventful until we pulled into our driveway……

Touristo started sobbing a sob I had never heard before.  He was able to get out the words “Disneyland is not in Melbourne” over and over and over.  Touristo has been helping me plan the big trip (in his own way) to Korea and Japan at Christmas, where we will visit Tokyo Disneyland (his favourite place on earth).  He had been expecting that when we got on the plane, we would be going to Disneyland at some point during the trip.  When he realised this was not happening……….total despair.  I was able to explain to him that we are going there at Christmas-time and he eventually calmed (after a bribery trip to KFC to get a drumstick, and more explanation).  So the real reason he had been acting out of character was that the reality of the weekend didn’t match his expectation of what was going to happen.  Our expectations weren’t even slightly aligned.

I had primed him before going about why we were going to Melbourne and what we would be doing in Melbourne, but the confusion must have come about because he thought we were going because [the reason I gave] AS WELL as Disneyland.  This morning he woke up hoping that today would be ‘Christmas-time’ and it was not…….more disappointment……so I am going to create a visual calendar with a picture of what we are going to be doing on each day during the lead up. Then I will have a picture of Touristo that we can move from one day to the next and cross out the days behind us……hopefully this helps.

I know this seems like he is having a massive first world whine, but it’s not even about Disneyland as much as it is about expectation not matching reality,  and not being able to communicate that.  For a kid with autism this is really, really hard.  For 4 days he had been expecting his favourite thing in the world – keenly anticipating when this would happen.  The build up would have been huge!  He had no way of communicating his expectations as he is only minimally verbal, so the let down when he realised that this very huge expectation wasn’t eventuating would have been truly and genuinely devastating for a 5 year old.

So all in all, the trip was a bit of a bust.  But my little buddies and I spent an amazing hour on Qantas’ amazing business class product and that was unbelievably cool…..they also got to splash in a reallllllyyyyy nice hotel pool and visit St Kilda Beach…..even though that outing got cut short due to said emergency.    Even though the short break did not really live up to anyone in the family’s expectation, it was also a really great trial run for the big trip and we learned a lot from it, some of which I will elaborate on in future posts.  We learned that disability services at the domestic airport is not useful for us, the pram is still necessary for us on a longer trip, we need to research parks and play areas ahead of time, a portable toddler toilet insert is a must not a ‘nice to have’, and it gave me confidence that no matter what happens, as a family we can manage and the kids are pretty tough especially the Princess.

Words lie…..actions, not so much

One of the concerns I hear time and time again from parents of very young autistic kids is “what if they can never tell me that they love me?”  Now, I will preface this by saying I truly believe that everyone’s feelings are what they are, they are valid and you generally can’t help them. But, what I do think I can provide is an autistic perspective and maybe give a different point of view.

This was not really on my radar too much with Touristo, purely because I don’t place a whole lot of value on people’s words….words lie. One interesting thing you learn when you have spent 35 years studying people, trying to understand them so you can fit in is……..people spend a large chunk of time saying one thing and meaning/doing another. Their words lie. People’s actions are far more authentic and meaningful.

My beautiful daughter for instance. She will come up to me, and out of her mouth comes this beautiful lilting tone saying “mummy I love you soooooooooo much”. A few seconds will pass by and she will follow this up with a request for cake. In that moment she isn’t thinking about how much she loves me…..just how much she loves cake. BUT when she wakes up in the morning and comes over to me, squishing her chubby toddler face into mine and kisses me like she is trying to rouse Sleeping Beauty then giggling when I open my eyes……well that means “I love you” even though she has not uttered a single word.

Now, despite my lack of investment in people’s words, I did think I would be overwhelmed with emotion the first time Touristo said “I love you”. But I have to admit, it didn’t mean what I thought it would. The thing I was most excited about was just that he used a phase, and that it was used in context. It was then that I realised he had already ‘told me’ that he loved me many times before and in far more meaningful ways. Like when I was carrying him in a queue and he grabbed my face and planted the never-ending kiss on me when we were at Tokyo Disney because he was just so excited and happy we took him there. Or the countless times he would hand lead me to his room and tuck himself in with me to cuddle because being together made everything better if he was struggling. The times when I have sobbed and he has run toward me and tried to wipe away my tears. Even little things like when he went through his gentle head bump phase. For years he had already been telling me he that he loved me…..in far more meaningful ways.

I then thought back to when I have said “I love you” to my mum. I try to remember to say it often because I know it makes her happy to hear it, and it’s never a lie because I always love and appreciate her. But what I think is more meaningful is when I spend hours booking her travel so she gets a first class experience at economy prices. Things like that are my real “I love you” to my mum. It’s far more practical and useful than three words that anyone can say willy nilly.

Now if you are sitting here thinking that I just don’t get it, that’s not entirely true. I do understand that words are very important for some people to hear, and that it can present difficulties when the person you love most can’t reciprocate in your language……. but that’s all it is, it’s a different language. Neither language style is more or less valid just…..different.

 

Difference…….look below the surface

Today I am feeling a bit low, and I want to vent my frustration.  I have a close friend who is 21 years old, and I feel like he has been failed by so many people in his young life.  Like myself, he is neuro-diverse (though diagnosed with ADHD not autism) and I feel that most of the mental health issues he is experiencing now as a young adult stem directly from people within the education sector not understanding him, not catering for him, not caring about him and from a very young age labeling him as naughty, a smart-ass, stupid and worthless.

You see with people like him and I, people generally tend to be put off by the differences.  They don’t time to think about ‘why this interesting creature behaves the way they do’. This young man is full of bravado, bullshit and is constantly going at a million miles an hour.  It’s all a front though.  He puts on this exterior to appear cool, and so people won’t discover some of the things he finds challenging, or realise that he is a bit different.  An example of this was when he was 15 years old and he would intentionally do things that he knew would get him kicked out of class or suspended (in some cases expelled).  He is smart and can read situations very well and these antics were very intentional, so nobody would find out that he couldn’t read.  Not one teacher picked up on this in 10 years of education because it’s easier to believe that he is just a ‘shit kid’ and exclude him from the class…….over…..and over…..and over again.

He’s not a ‘shit kid’, he’s one of the most brilliant people I know.  He is exceptionally intelligent, he is funny, honest, forthright, extraordinarily sensitive, loyal and has one of the strongest senses of social justice that I have ever encountered.  As a kid, even when he was being oppositional, you could see that below the bluster there was an amazing person with bucketloads of potential……you just needed to dig a bit.  But now after living on this earth for 21 years and consistently being made feel to believe that he is stupid, unlovable, naughty, bad, a pain in the ass, worthless, useless….etc…….well now he wholeheartedly believes this to be his truth.  It breaks my heart.  I feel that nothing I say to him is making a dent.  He has some amazing family members in his life too, and I suspect nothing they say dents either.

I hope that he is able to come out of the mindset that he is currently in because I think there are so many amazing experiences ahead of him.  But I feel so frustrated because I know in my heart that if people had taken the time to look below the surface, and really get to know him…….maybe he wouldn’t be in the place he is right now.

Back to happy programming later.

Terminology in the Autism Space

So on my social media pages connected to this blog, I tend to use the word ‘autistic’ opposed to person-first language like ‘person on the spectrum’ or ‘person with autism’, which is a very intentional choice.  Today on Insta, a service provider in the autism space wanted to get her head around my preference for the language I use surrounding autism, as she wanted an adult autistic perspective.  Her training had been to always use ‘person first language’, so my choice of language is probably quite confusing.  Because I absolutely loved this question, I thought I would turn my response into a blog post.  I will however preempt this by making note that language preference is a very personal issue for some and you should always try to use the language that the person you are speaking to prefers (when known).  Also, my opinion is just that……MY preference, and my opinion…..I don’t pretend to, and don’t speak for the entire autistic community (that would be impossible).

‘Person with Autism’ v ‘Autistic’

  •  In my work I have been asked to use ‘person on the autism spectrum’ in all the content I write as it is deemed to be the terminology that seems to be the least contentious – although in Australia many of the larger organisations are shifting back to using the word ‘autistic’ after listening to the community.
  • In my personal life, I use autistic because autism is completely pervasive. It affects the way an autistic person sees, does, feels, communicates, thinks etc etc etc. Whilst autism doesn’t define someone, it DOES affect the way they do pretty much everything in life…..so they are not ‘a person with autism’. Autism isn’t with someone, because they can’t detach it if they want to. It doesn’t come along with you like a backpack, that you can put down somewhere when it gets heavy…..it’s a fundamental part of who you are.
  • I have found that it is mainly well-intentioned professionals in the autism space pushing for the person-first “person with autism” thing. The rationale is that we have to see the person before the diagnosis, and I get that. However, is you ask MOST adult autistics what language they prefer, it is “autistic” or “aspie” if they were originally diagnosed with Asperger’s under the DSM IV (which no longer exists in the current diagnostic manual).  Most autistics don’t consider ‘autistic’ a negative term (unless it’s negatively-loaded contextually).
  • I LOVE when professionals in the field, actually take the time and ask you what your preference is. Many professionals just like to tell us whatever the autism field (made up primarily of neuro-typicals) has determined to be right. Although, I think it can be difficult for service providers, because the pressure from your boss might be one thing and your client might prefer something different.

The term ‘special needs’

  • With regard to the term ‘special needs’, autistic’s needs aren’t particularly special. They are just human needs. For some autistics they may have more need for assistance than a typical person, but it’s not ‘special’. Unfortunately I don’t think there is a really suitable replacement for this term yet…. I just try and avoid where possible. I also avoid the terms ‘disability’ (I like diffability) and ‘disorder’ because the autistic brain isn’t disordered and autism isn’t necessarily a disability (although it can be depending on the individual).

The terms ‘high and low functioning’

  • Now here is terminology that is pretty unanimously disliked within the autism community – ‘high and low functioning’. If you polled autistic adults about these terms, I think about 95% would say they are not nice labels, for a variety of reasons but I will just touch on why it’s not an accurate measure (there is a whole post’s material on why these terms are not appropriate though). Autism isn’t a linear scale of functionality. Myself for example: my written communication skills are well above average. My verbal communication is slightly below average, except for things like literal language, idioms and sarcasm….. with those parts of language I am well below average – but I like to think I am well spoken. My social functionality is well below average, but my theory of mind is well above average. My nervous system is rubbish, but my coping skills to manage it are great. Every time I have to deal with the tiniest change I crumble internally, but cope outwardly (although as a child I hadn’t learned these skills yet)….. So where does someone like that fall on the functionality scale? Plus I know ‘high functioning’, twice-exceptional types with master’s degrees who aren’t employed because their anxiety and ability to cope with change leaves them unable to leave their house….. But there are non-verbal autistics who have also been diagnosed with an intellectual disability who manage entry level jobs and live semi-independently….. To me the latter is far more ‘functional’ at life, but they are labelled as ‘low-functioning’.  It’s a stupid measure.  If there is a legitimate need to talk about a child’s, client’s, whoever’s ‘functionality’ there are much more accurate, person-centred ways of doing so.
  • Just as a final point which kind of relates to the ‘high/low functioning’ terminology, but is mostly just something I would like throw in here because I can as this is my platform.  A lot of people assume that if someone is non/partially verbal that it automatically equates to ‘low functionality’/cognition (intelligence).  This is not true – there are a lot more reasons that someone may not be able to speak than just low cognition, and I think augmentative and alternative communication (AAC) has been very effective in demonstrating how much people who cannot speak/speak well often know. Verbal communication ability is not indicative of level of intelligence, I mean hey look at some of our political leaders.  They do a shit-load of talking, but a lot of them don’t have their brain engaged when running their mouth.

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