Sibling relationships on the spectrum

So today’s post is going to be a little bit of a random brain explosion about the dynamic of relationships within families where one or more family members are autistic.   So for those of you who follow us on Instagram you might have seen a picture this week of the Princess packing her belongings and ‘going to Melbourne in a big, big plane’.  She kissed Touristo and I goodbye and said that she would be back soon before proceeding to her bedroom, sitting on her bed, ‘buckling her seatbelt’ etc etc.  She then went to the aquarium, stayed in a hotel before getting back on the plane to ‘come home’.  It was very cute imaginative play.  But then she wanted to take her brother and I to Melbourne…….and he was completely confused.  She told him they were going on a ‘big, big plane’ and he was looking for the plane because he LOVES planes and he is very literal.  Then he looked at me as if to say “WTF are we doing here”.  Touristo had no clue what he was meant to be doing so I helped him to buckle his seat belt and just generally play along.  Anyhow…..as confused as he was he went along with her game……because he loves her and likes to be with her, and I think he may have started to understand the game a little bit towards the end.

This reminded me a lot of when my sister and I were little.  My sister is one of those people who 99% of people like instantly upon meeting.  She is creative, artistic, intelligent and has an amazing imagination.  She was the type of child who carried on with the Santa fantasy for years, cognitively knowing that it was a fantasy but desperately wanting to keep that sort of magic in her life as long as possible.  My sister also happens to be the Princess’s kindred spirit – they are very similar.  As a child, I let my sister do the talking and upon meeting me, people tended to take me for aloof or possibly unfriendly, though if you take the time to really know me I am shy, loyal, very kind with a strong sense of social justice.  I was and still am very logical, process driven and take comfort in things that are provable, needless to say the Santa fantasy ended for me at about age 5, but I never spoiled it for my sister because I knew how much she loved the magic.  I guess it’s not that hard to guess that Touristo is my kindred spirit.

Growing up, my sister and I were polar opposites but we worked together as a perfect team.  We helped each other with the things that each other found difficult, and we were never competitive with each other because the strengths we both had were not even vaguely comparable.  I am now seeing a second iteration of that relationship with my children, and the Princess’s imaginative play the other day was such a glaring example.  It made me think back to when my sister and I were children and she liked to ‘go to Narnia through the closet’.  Her imagination allowed her to actually feel like we were going to meet Aslan!  Unfortunately, my imagination does not allow me to do that……we were still just in a closet.  But I played along with her, because she is my sister, I loved her and wanted to hang around with her and heck I really did want to go to Narnia too…….and whilst I never really completely ‘got’ imaginative play, I learned how to do it well enough to fake my way through pre-school.  Looking back now I realise just how much she taught me without trying….I mean this is just one tiny example…..a bigger one was being able to model off her social skills, which is immensely useful.

This leads me to my point.  I often see some ‘autism sibling’ and ‘autism parent’ memes that absolutely break my heart.  I think the one that really inspired this post was “a big high five for the autism siblings.  They make sacrifices that their friends never understand”, as displayed in the feature picture of this post.  Now I may alienate some of my neurotypical (NT) readers with this but I feel I do have to explain why I find this heartbreaking and offensive.  What this meme is really saying is “NT kids you are so strong, amazing and brilliant for putting up with this burden of a sibling”.  Autistics are so often painted as burdensome, challenging, difficult and just generally negative, and that the people in their life should be praised or handled a medal for having to ‘put up’ with such a huge undertaking. Do NT people not understand why this is so hurtful?  Really? To constantly be painted as a struggle or difficulty that has to be endured? I thought I was meant to be the one with poor theory of mind……

Now I am not being so totally disingenuous as to suggest that parenting or being a sibling to an autistic person is always a walk in the park.  But as far as parenting goes, parenting in general is very difficult.  It is isolating.  There are challenges and to a large extent you have to give up your own sense of self.  This is with ALL kids.  The challenges that are presented in raising a severely autistic kid are very different but you adapt and accommodate to those different needs.  But the gifts you get back, if you are open to it are immeasurable.  Helping my son navigate his way through this incredibly confusing world is the biggest privilege that has ever been bestowed upon me.  I am not a saint, amazing, super-mum or a martyr for being his mother in particular, not in the slightest.  For the record, I think ALL actively engaged parents are amazing, rock stars for what they do day in day out.

In regard to this particular meme and sibling relationships.  You know what, you might have a different path to walk down than your friends, but to say that it is a life full of struggles…….?   Please.  It also fails to mention everything that your sibling relationship gives you in terms of friendship and/or personal development?  With regard to my own relationship with my sister, I am sure she would say that our relationship has been mutually beneficial.  We talk every day, we balance each other out and we are there for each other.  With regard to my children, maybe one day the Princess will think she has endured struggle because of her brother’s severe autism.  What she feels are her feelings, and everyone is entitled to their feelings.  I just hope that she also sees everything that her brother’s severe autism has brought to her and our family like:

  • a tight knit family that became even tighter to meet our different needs
  • the extra outings we went on to nudge Touristo  out of his comfort zone and teach him how to exist in the big, bad scary world e.g. go out and order a cookie from the Bunnings cafe
  • the holidays that we just wouldn’t have seen as a priority if I didn’t think they were important for broadening Touristo’s world, teaching adaptive skills and nudging him out of his comfort zone
  • all the extra treats she scored when her brother was rewarded for using his language (she gets one by default when he earns one – in return she spontaneously asks for things she knows he might like)
  • parents that dedicated as much one on one focused time with her as possible because they don’t want her growing up feeling like she doesn’t get enough attention
  • a brother who is loyal and very patient with her even when she is being a strop
  • her kindness, patience and acceptance of all people that she has already developed at such a young age.  He makes her a better human being
  • she even gets to sleep snuggled up to her mama. I sleep in their room because Touristo night wakes.  If he can reach out and touch me in the next bed, he goes straight back to sleep.  So the Princess gets to sleep in my bed because I don’t want her to feel left out.

Anyhow that’s me for this week, I welcome all thoughts and comments either here or on Facebook.  Let’s start a discussion.

Qantas’ disability services

In last week’s blog post I briefly mentioned how I would not bother using Qantas’ disability services again on a domestic flight, and thought I should elaborate on that.  First and foremost I would like to say that this is no reflection on Qantas’ customer service at the airport as it was really good.  It was more the framework that staff were working to that was unhelpful, as well as ‘Special Handling’ team that I contacted beforehand not really understanding the accommodations that could be useful for autistics.  It looks like they have plans for passengers with physical disability and medical concerns, but not autism specifically which perplexes me because it is such a common disability.

What accommodations did I request?

When I initially consulted the disability section of the Qantas web page, I was somewhat surprised to note that there were extensive sections on the process for assisting passengers with a variety of disabilities, but absolutely nothing on autism.  So I made an initial inquiry via email and I wanted to keep it fairly broad to I could report back in with any variety of accommodations that they may offer.  My initial contact:

“My son XXXXXXXX is autistic (moderate to severe). He is a pretty good traveller, however ………………….. I was wondering if there were any services to assist autistic passengers?”

I found their reply below unusual as autism is not a medical condition.  Though to be fair my initial inquiry was fairy broad, and in the spirit of being transparent, yes I was keeping it quite broad because I was testing if Qantas’ disability services had any idea of what would be helpful for a family travelling with an autistic 6  year old.  They had no clue.:

“Should you require an Escort on board this would be at an additional cost and would need to be arranged in advanced and at least five days prior to departing. Flight attendants are not medically trained.

We do require your son to be able to attend to his own on board needs however as he is travelling with you this would be your responsibility in flight to assist your son where necessary with toileting, feeding themselves as well as administrating own medication and following instructions.”

I decided to be less difficult and get specific:

“Thanks for your reply. He has no medical issues.  I was thinking more along the lines of just having it noted on his reservation so crew are aware.

 

The biggest issue for us though is just queues/waiting. Is there a way we could do expedited security and boarding, as it would also make the world of difference.

 

Oh and sorry to be a pain, but I just wanted to check that it is ok to use his CARES harness on these flights?”

 

Their response:

“Qantas provides a meet and assist service to passengers who require guidance and assistance proceeding through airport facilities and/or the handling of documents.

As per your email, the appropriate request for assistance has been placed in your booking as well as the Cares Restraint.”

This was much more useful, however in hindsight they hadn’t confirmed the use of the CARES Harness, just acknowledged it on the booking and this is where the difficulty started.

The problem

The day before the flight I went to check in on-line.  It created a boarding pass for my daughter and I, but the system would not issue one for Touristo.  After 40 minutes on hold with customer service I found out that this was because someone had logged the CARES Harness as a car seat and I had to meet a rep at the airport for an Engineer to fit it.  If doesn’t need ‘fitting’, it takes 30 seconds to fit over the seat.  The CARES Harness is approved for use in general on Qantas as stated on their website, I had just wanted to know ahead of time if it could be used on the business class seats (due to the lie flat mechanism on the back).  Anyhow…….the customer service rep could not change the note on our booking and issue the boarding pass online, so I had to find someone to help at the airport, which didn’t bother me so much because I had to meet someone for the meet and greet service anyway.

When I arrived at the airport there was no clear signage as to how to actually find the meet and greet service.  As I was wrangling both kids by myself, I just grabbed the first human I could find.  It wasn’t her area, nor her responsibility but she was an absolute champ (as far as ground staff and cabin crew are concerned – the folks at Qantas are absolute stars – I just want to keep reiterating that) and did her absolute best to clear up the issue, print our boarding passes and expedite us through to our gate.  So what’s the issue?  It took longer to find the appropriate person, wait for them to be available, explain the convoluted issue and have the boarding passes printed, than it would have if I had been able to download boarding passes to my phone and wait at the regular security line as it was just a domestic flight.

So whilst none of this was hugely problematic, it was quite stressful and made the trip more difficult than it needed to be. I was just really lucky that Touristo was having a particularly good day – it could have been much worse.  I feel like the disabilities sections of airlines do need to take a step up and invest the same level of effort with passengers who have developmental / cognitive disabilities as they do for passengers with physical disabilities.

Once again, I would like to reiterate that I found the staff on the day to be amazing, both in the skies and on the ground.  It is the disability services section that has a long way to go.  Now anyone who knows me will know that I am not the type to say something is crap, without providing constructive ideas for improvement…..so here goes.

A few suggestions as to how Qantas could make their airline more autism friendly.

Include an autism section on the disability services section of the airline’s website, develop processes for accommodating autistic passengers and train staff in disability services appropriately.
I think this should be a bare minimum sort of thing really.  Obviously due to the nature of autism being so individual, the accommodations would need to vary from person to person however I feel a reasonable process would be Qantas saying “here are all of the possible accommodations we have for autistic passengers. Which ones of these are going to help you and your individual needs?”  I don’t feel it should be up to customers to have to do the asking, as some passengers aren’t even going to necessarily know what is possible and what would help – there should be a list ready to work from.

This could also be a great place to house some really great resources e.g.:

  • social stories
  • video social stories
  • instructional videos on what to expect
  • airport maps – detailing where to find the meet and greet service for passengers with disabilities 
  • suggested break/quiet areas
  • ‘how to guides’ for autistic adults explicitly stating how to get their boarding pass, check their bags, go through security and get to their gate so they can get their head around it ahead of time and not melt down at the airport

Stroller as wheelchair service – allow passengers with cognitive / developmental disabilities to check their stroller at the gate.
I have done this in other airports around the world and it was unbelievably handy.  Whilst a lot of airports do offer rental strollers, this is not particularly appropriate because my son is about 120cm tall and really needs his own stroller that he fits in – he hasn’t been able to fit in a rental stroller since he was two years old.  Having the ability to keep him feeling safe and contained through a terminal would be AMAZING, particularly at large, international terminals.

Expedited security with the options of not having to meet a customer service person
For some people on the autism spectrum, it would be extremely handy to have a customer service person walk them to the gate.  This would be particularly helpful for adults who have the ability to wait, but have difficulty organising their documents, knowing how to get to their gate or feel they could get overwhelmed by the whole process and may need support.  However, in our situation waiting for a customer service person so we don’t have to wait at security makes no sense.  A better option would just be a note on the reservation stating that our party is entitled to use the express path at security.

Practice days for kids 
For children who have never traveled before, it would be very helpful to have days throughout the year where a group of people can practice the process of getting through the airport and onto a plane.  This also would allow them not to just learn the process, but also familiarise themselves with the airport and a plane so it’s not so uncomfortable.  Some families don’t travel because they don’t want to risk spending thousands of dollars on a vacation and not knowing if they can even get through an airport and on to the plane.  A service like this would allow families to test this and if it didn’t go well, practice this over time so eventually it is doable.

Signage for where to find the staff to assist with ‘meet and greet’ at the airport
I don’t think this point requires elaboration.

Now these suggestions are just a handful of possibilities, none of which take a great deal to implement. If an airline truly wanted to be inclusive for all passengers, there is way more that an airline could do than this initial list that I thought of on the fly…… I just wanted to illustrate the bare bones starting point that would be helpful.

Anyway, I am signing off – I would love to hear any reader suggestions either here or on Facebook.

 

 

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.

If you like this content, remember to like on Facebook of Instagram for updates.  Please feel free to comment with your thoughts / preferences regarding autism terminology either on here or Facebook.

The early days of autism…….post diagnosis.

I don’t quite know why but whenever Touristo and I are out and about at a park we attract people who have developmental concerns about their kids.  Maybe it’s because people get the feeling that I am going to be quite open about our story, or maybe it is just because once you watch Touristo for a few minutes it becomes obvious that he does have developmental differences that they can relate to.  I think people are pretty disconnected these days and are looking for someone to talk to.

Because of these recent experiences, this week’s post has been inspired by a few people that I have spoken to in the last few weeks who have recently had a child diagnosed with autism, are looking into diagnosis or want to know how to support someone whose family is going through this process. So I just want to run through a few thoughts I have about this stage in our ‘journey’ (I freaking hate this word used this way, but it’s really very apt).

“There is nothing wrong with my child, but I do have concerns about x, y and z”
“There is only one thing I can give you a guarantee on and that is, there IS NOTHING wrong with your child.  He/she has been created in exactly the way they were meant to be.  If you have those concerns, they may be wired differently and it is very worthwhile investigating even if it’s just a niggling feeling because they may benefit from various accommodations, adaptations and assistance.  Also, if they are autistic or have any developmental difference, knowing about it will empower you and give you the tools to understand how best to connect, communicate and accommodate your child.”

People’s variations on ‘the doom’ of diagnosis
I have written previously about how I think that in the field of autism, right from the onset, parents are given a really bleak view of what their child’s life and development will be like.  When you look at the description of autism is in the DSM-5 it is this horrible list of impairments, so parents read this and think “shit, this is my beautiful child’s life”.  This is something that really grinds my gears, and I think when any professional is speaking to the parents of a newly diagnosed child they need to be careful to paint a more accurate and positive picture of what autism is.  Parents need to know that whilst autism can present challenges, it can also have great beauty to it with some autistic characterics being unfailing honesty, authenticity, deep sensitivity and a strong sense of social justice. Some autistic people also have exceptional ability in certain fields, or the ability to turn areas of fascination into productive outcomes.  Additionally, perseverating in autism is seen as a big, fat negative, but I have always found it to be particularly useful in my current field of work.  Not many people can stay on a topic for as long as me when I am fascinated!

“Ahhhhhhhh what sort of future are they going to have”
Before Touristo was diagnosed, I had this very rigid idea of what success in life looked like.  I had this idea that I would send my kids to a good school, they would get into a good university, get a good graduate role, make decent coin and then one day have their own family.  Now this may all be still completely possible but Touristo’s unknown future forced me to really consider what a successful life consists of and I have to say, I was so wrong.  I have not been more wrong about anything in my life.  Looking back this idea is so arrogant and so elitist, and was full of me projecting what I determine success to be.

When you really sit down and consider what a successful life is, there is only one thing that is really important and that is happiness, and there are infinite paths on how to get to there.  There are so many different variations on how one can lead a fulfilling and meaningful life, and who determines what meaningful is anyhow?  I am now at the point where I still wonder what the future holds for Touristo but only in the same way that I wonder about the Princess’s future.  I know that they are both loved, supported and will have the opportunity to have meaningful and happy lives.  This may be independently, or maybe not……either way, doesn’t really matter.

“We have to start every single sort of Early Intervention right now to ‘close the gap'”
I know this is difficult because you are scared.  I have been there.  You have been scared by the autism field into believing that your child needs 40 hours a week of intensive therapy ‘to make them normal’, or so they can ‘mask their autism’.   But just stop and take a breather.  No matter what therapy you do, they will always be autistic and being autistic is just as valid as being neurotypical.  Accepting this is very liberating.  For the record, I think therapy can be great in helping kids realise their potential, and I think it is even more valuable for upskilling parents so that they feel confident and capable in assisting their kids at home and making every interaction a learning opportunity.  But there is a middle ground and children still need opportunity to enjoy being a kid.

One last, but probably most important thought.  The day before your kid was diagnosed you probably thought that they were the most perfect creature on earth.  Your finest creation.  When you come out from that diagnostic appointment, absolutely nothing has changed with your child.  Not a thing.  The only thing that has changed is your mindset.

*Note – this is all purely my opinion, but it is all stuff that I wish someone had of said to me years ago.  Maybe it would have helped, maybe at the time I wasn’t in the mindset to hear it – who knows.  I just want to provoke a little thought.

If you would like to see more posts like this please come along and join me on Facebook (link in the right hand column)

 

Autism……what if we moved to a positive rethink?

Anyone who has had themselves or their child diagnosed with autism will probably be familiar with the following scenario. The diagnostician sits down with you with a serious but sympathetic look on their face. There is probably a box of tissues within arms reach, and eventually they say something to the tune of “you/your child has an Autism Spectrum Disorder”. They pause and let the words sink in before going on to tell you that autism is a lifelong disability characterised by…… blah blah blah, listing every characteristic you/your child has as a negative. Suddenly everything you saw as quirky, unique and cool has been labelled as a deficit, and something requiring some sort of therapy to change it. So the starting point in autism tends to be overwhelmingly negative, which to be honest scares the shit out of a lot of people, particularly parents of newly diagnosed kids. One thing I personally found a bit upsetting when Touristo was diagnosed was that about 80-90% of the autistic characteristics the diagnostician noted in him, are traits that he shares to some degree with me. It made me feel like all these things that I found beautifully eccentric about myself are apparently considered odd and deficient by the rest of the world.

Some time has now passed and one thing I have taken away from this is I think how we approach autism requires a drastic rethink, and I feel this is required from the very first encounter people have with professionals within the field.

What if we started looking at a strengths based approach to autism? What if we looked at autistic characteristics in a positive light?

An example of this strengths based/positive approach is something I was daydreaming about the other day. I was wondering what Touristo would be like as an adult, something I am sure many parents do. At the moment he is considered moderate to severely autistic, semi-verbal and cognitive testing is not really accurate due to his severe language delay, but this is changing rapidly at the moment and he is kind of at the point where a very wide variety of outcomes are possible. But just taking his personality into account and not focussing on the unknowns, I thought about what a future employer might say about him in a performance review based on his autistic characteristics that are perceived as ‘deficits’:

– Touristo always comes to work, to work and does not waste time chatting at the water cooler.

– Touristo has a strong interest in his field of work and focuses intently.

– Touristo has amazing processes and systems in place to ensure consistency.

– Touristo’s output is always completed with consistent quality.

– Touristo is never late to work and is a very loyal, trustworthy employee.

– Touristo’s communication style, is clear and concise, not leaving anything open to interpretation.

– Touristo is direct and does not engage in office politics.

– Touristo is determined, perseveres and will consistently apply himself until he has mastered a new system.

– Touristo is passionate and has a strong sense of social justice.

– Touristo is unfailingly honest.

Now of course the point of this is not to try and create a stereotype, it is based off one individual’s strengths and will vary from person to person. I wanted to illustrate that all of these traits stem from characteristics that are listed as deficits in the diagnostic criteria for autism, but I see these traits as things that can be overwhelmingly positively shaped…..I don’t get it.

I just don’t see autism as something that needs to be ‘fixed’. People need to learn to accept and embrace a wider variety of people, and positively harness the strengths that people have.

I would love to hear others’ opinions on a positive rethink of autism on our Facebook page.

We’re off to Melbourne next month…… cashing in loyalty miles / points

So this has been a good week! A whole lot of things with Touristo have finally come to fruition and an extra bonus bit of good news was the opportunity to tack a family long weekend on to the end of a work function that my husband is attending in Melbourne next month.  We haven’t seen our family who live in Melbourne in ages, so it’s an amazing opportunity to reconnect.  My husband’s flights and 2 nights accommodation are paid for, but I still needed to pay for flights for the Princess, Touristo and myself, plus two more nights accommodation. When I researched all of the available flights, they were all super expensive considering it’s a really short flight mostly due to the lack of flexibility around timing.  Since we are saving for our mega trip at the end of the year, I thought we should probably not go.  Then again, whilst I may not be wealthy in terms of money,  I have banked a significant amount of Qantas points this year, and even though I am saving them for a particular redemption down the track, I could afford to use some of them to go see family.

Next step was checking availability. At the time I wanted to fly down the only seats available were in business class.  I really didn’t want to use that many points because the domestic business class seats in Qantas 737s look to be more like what you would expect from a premium economy seat on an international flight, plus Qantas’s fees and taxes are a joke (American’s reading this: the great thing about using points on your airlines is that your fees and taxes are much, much lower).  Not a great value redemption BUT I really wanted to go, so booked business class there and economy return.  When I was selecting seats for the outbound leg I was a little surprised at the 1 – 2 – 1 configuration. Turns out Qantas is using their retrofitted A330s on this route for some flights and I got lucky with their swanky new business class (image at the top of this article).  Now for us this is AWESOME and TERRIBLE at the same time.  For this flight, I am travelling BY MYSELF with my little buddies.  I really don’t know how this is going to go with everyone in their own pod – it really depends on how the little princess takes to the situation I guess.  Touristo will be fine I suspect as long as he has his CARES Harness, but the Princess…..well depends on the day really!  She is a diva so may take to flying in her own pod quite nicely.  But if worst comes to worst, it’s only a 90 minute flight and there is free wine… so I will survive.

Next point of business, booking accommodation for the 2 extra nights….. Once again I didn’t really want to spend much because once again…….big holiday later in the year. But I happened to have a whole bunch of IHG (Intercontinental Hotel Group) points in my account that I acquired from many hours of doing online surveys as well as from prior stays (this is my major hotel loyalty program because it encompasses everything from Holiday Inn Express through to Intercontinental, and I can transfer points to all the frequent flyer programs I use).  I had planned to transfer these into United miles for another big redemption I have planned……but these points have managed to soften the blow of a really nice hotel stay instead.

So, for the cost of fees and taxes on the flights, we have nabbed ourselves a really nice long weekend away.  Please like on Facebook and Insta to stay tuned for a full run down on this flight, the hotels and activities on this trip.

 

Where it all began. Our first international trip with Touristo…

Our first overseas family holiday came about as a combination of my maternity leave, husband needing a holiday, super cheap flights to Japan, but most importantly Touristo was happiest when he was partaking in marathon walks in the Ergo carrier or drives in the car that went on for hours.  At the time we thought Touristo was just an unsettled or colicky baby, but with the beauty of hindsight this was the very first sign of autism and the need for constant vestibular input, and the marathon walks around our neighbourhood were getting boring.  So what better place to walk around than Japan?  I had visited Japan before, plus it was number one on my husband’s bucket list, so I booked the tickets and off we went!

The flight over was an epic nightmare!  I had booked this trip and put zero thought into travelling with a baby.  I had booked a day flight from Sydney to Tokyo and really hadn’t thought about how we were going to divide sharing the baby wrangling, how we were going to entertain Touristo or what to pack in our carry on.  By the end of the day we all got to the hotel extremely stressed, shaken, slightly traumatised and very cranky with each other, vowing to NEVER, EVER get on a plane with children again.  We all eventually passed out from fatigue, and when we woke up the next morning decided that we were going to try and make the best of the next 10 days.

We traded in our voucher for the JR Rail pass and boarded a train to Hiroshima and over the next few days made our way back to Tokyo.  Travelling in Japan was so easy with Touristo, he just hung out super contentedly in his Ergo, had naps, and when he was awake his eyes opened up to the size of saucers so he could take in absolutely every detail around him.  The novelty of travelling also seemed to pique his interest in solids.  Up until this point he had never shown an interest in solid food, but the novelty of different food had him trying EVERYTHING.

By the end of the holiday, none of us wanted to go home.  We all had time to connect as a family unit in a way that wasn’t possible at home, and we had only just seen a snippet of everything that we wanted to see.  I also loved how much easier Touristo was on the road, plus I was stressing the plane trip back home.

The flight home was a night flight and I had booked the bulkhead row with bassinet ahead of time and we formulated a plan as to who would look after what, to alleviate stress.  The most important thing though was reflecting on the really, really bad flight, assessing what went wrong, why and what could be done so we didn’t run into the same issues again.  A lot of this had to do with what we had on hand and easily accessible in our carry-on luggage.  You know what? This time it was a completely different experience.  Touristo got really excited about being on a plane and curled up on my chest and went to sleep for about 8 hours of a 10 hour flight.

This trip was a total game-changer for me.  Both my husband and I had traveled a little before having kids but it was by no means a priority.  Now it is a priority, because getting to see the world through the eyes of your kids is amazing especially in our case because we have the contrast of the Princess who sees the world in terms of Princesses, castles, dancing and fairy tales, alongside Touristo who has a totally unique perspective on the world which is totally beautiful.

Travelling these days requires a fair bit more planning than this to set us up for success as Touristo requires a fair few accommodations, but it is absolutely worth the extra effort because all of our best memories as a family have been made whilst travelling.

Would love to hear some reader experiences of their best / worst / funniest family travel moments in the comments section at https://www.facebook.com/PointHacksandAutismFriendlyFamilyTravel/

If you would like any tips/tricks about travelling please feel free to hit me up via our Facebook page, or if you like this content and want to see more like this, please go to our Facebook link and like the page.