“So how do you entertain an autistic child on long haul flights when they have limited expressive and receptive communication skills?”

A little while ago, I asked my Instagram followers to send me any questions they had regarding travelling when a member of their travel party is autistic.  This one really hit home, as it is something that I have been adapting and refining to suit Touristo’s changing needs as he develops and grows older.  I answered this via some Insta live posts, but thought I should write some more permanent notes here.  For this post, I am specifically talking about travelling with autistic children, but the same pointers can be adapted for adult travel companions.

My first few blog posts contain some very broad pointers about travelling with autistic children, however I feel this particular point deserves it’s own post because when you are flying long haul it really is where you need to focus the most amount of energy in your planning.  I think I have said this on my site before, but I really don’t find flying with Touristo (or travelling in general) any more difficult than I do with the Princess, but their needs are very different (and this shouldn’t be ignored).  If I chucked a couple of colouring books, some stickers and books into Touristo’s carry on and expected that to entertain Touristo in the same way it entertains the Princess, it would not be an easy, nor an enjoyable flight! He’s just not motivated by those things, and when you are packed into such a tiny space with so many other people, it is not the time to insist he try these activities! If I make the right accommodations though, he is a very easy-going travel buddy.  So how do I entertain ‘Touristo the Tiny Traveller’ on long haul flights?

  • This one is a bit basic, but I do try and travel on overnight flights as much as logistically possible.  I am shattered in the morning because I don’t sleep well on planes, but my children do….. so to eliminate a lot of time trying to entertain the kids, I pick flight times where I think there is a good chance they will sleep.
  • Snacks.  Like many other autistic children, Touristo is particular with food (a trait he shares with his mum).  So I pack all of his favourite snacks – a full tummy eliminates HANGRY.  Now this isn’t rocket science, I know…..but a tip you may not have considered is……..sabotage.  As much as you can, without changing the food so much they will be annoyed is…..make the bits smaller/harder to eat e.g. I chop up fruit salad into teeny tiny pieces which Touristo picks up one by one, thus taking him 20 minutes to eat something that would usually take 5 minutes.
  • Stuff. Touristo likes unwrapping presents. So before we travel, I do a shop for little ‘things’ that he might like and that might entertain him for a few minutes at a time.  I wrap them individually and hand them out one at a time.  This has bought me hours of quiet moments over the years. The sorts of things I buy are all very cheap for example, Disney figurines, sensory gadgets, and just basically cheap (I consider $5 expensive), novel things purchased from dollar stores or Alibaba.com (who have REALLY cheap fidget cubes and spinners etc).
  • Lots of $2 headphones.  This one won’t apply to most people out there, but when I can find something on the in-flight entertainment that he likes, he chews the cord of the headphones.  So I stock up from stores like Daiso, so he has his own and if he destroys them, it doesn’t upset me.
  • Cater for your child’s individual sensory needs. I always take his weighted blanket on the plane, even for day flights because it relaxes him and stops him kicking his legs.  I also take lots of things for chewing, as well as stretchy toys and things that are good for fiddling with.  A lot of the ‘presents’ I take for him, double as sensory things.
  • The good old iPad/tablet.  Goes without saying really that this is not the time to limit access to technology.  If he uses it for 14 hours straight on a plane and it keeps him happy, then “thank you to the late Steve Jobs”.  Some important things I do to the iPad though before travelling are; remove all the internet dependent apps, remove all to the apps that are location dependent if travelling overseas (I am talking about you ABC for Kids), download all of the YouTubes he watches repetitively to YouTube Red so he can access offline, and download as many apps that can be taught through visual or hand over hand instruction.  I know some flights have wi-fi but it is often patchy at best, so please don’t rely on it even if it is advertised as existing on your flight. I also show him the changes I make to the iPad BEFORE we travel.  If he is going to get upset about it, I want him to do that at home not on the plane.

Now these are things that work the best for Touristo.  As we all know, what works for one autistic person, may do nothing for the next….for example, these things would not have worked for me as a child but give me a few packs of post it notes to fold into paper cranes, and a packet of straws to chew and I would have been fine. But they are ideas meant as a springboard to start thinking about what might work well for your family.  Try to get into your child’s head and think about what might work for them.

Comment below if you care to share what works for entertaining yourself/your child on long haul travel.

Why I will never ‘grieve’ for my son being autistic

On his way…..

I can honestly say I have loved Touristo since the moment I found out I was pregnant with him. He was desperately wanted, and from the minute I saw those two lines saying he was on his way, my heart  beat for him.  The only thing I knew about him at that stage was that he was male and that he enjoyed listening to Brian McKnight. Nothing else mattered.

Nice to meet you

So after a lot of waiting and a rough pregnancy, it was time to meet our baby. The labour was very long, and by the end of it I was completely exhausted. Just when I thought I was about to pass out from fatigue, Touristo decided he would grace us with his presence. The moment the midwife gently laid him on my chest was the most beautiful thing I had ever experienced, and I remember sobbing “he’s perfect, he’s perfect, he’s perfect”, over and over. Now to be fair, nobody is perfect but he was just as he was meant to be. In hindsight though he was long and skinny, covered in vernix, his skin was a weird colour……but he was mine and just as he was meant to be. By this point I hadn’t slept in over 2 days and I still couldn’t sleep now because I was so enamoured.

I had just birthed my very much wanted child. He was perfectly healthy and he was mine. I had never felt love like that.

Growing bigger

Right from the onset he had issues coping with the world from a sensory perspective. He needed to hear the steady rhythm of a heart beat to help him sleep. He needed to be swaddled to relax him, and loved touching and mouthing everything he could. But when these needs were met, he was the happiest, sweetest, gentlest baby on earth. It was like someone took all the extra happiness and light in the world and put it in this child, and this light shone out his big, saucer-like brown eyes.

As he grew older he continued to to be this most amazingly gentle, sweet boy. He also wanted to learn everything about the world around him all in one day. He was clearly very bright and inquisitive.

Eventually, we noticed differences in communication and other areas and sought out hearing tests, a speech assessment and a Paed. At this stage we were told he had a moderate speech delay. It wasn’t until a year later he was diagnosed with autism.

Hello autism

Touristo was diagnosed just after his third birthday. The Princess was only a few weeks old, and I remember having her in a baby sling during this appointment. The diagnostician delivered his diagnosis in a way that oozed sympathy, you know……the way you deliver really horrible news. Only, I didn’t think it was horrible. I had answers. Understanding what was going on for him allowed me to make adaptations so he could reach his greatest potential. Because of these answers I would also be able to make adaptations to my parenting that were more fair, helpful and respectful. I wasn’t a failure as a parent, I was just parenting the wrong way for him.

I initially sought refuge in parents’ forums where I was continually encouraged ‘to grieve for the life and child that I would never have’. I found this jarring. What the actual……? My son had not died, he was healthy and exactly as he was meant to be. He was still entirely that same person who nearly burst my heart open with joy the moment I met him. How could I ever, ever grieve someone so amazing? As for grieveing the life that I had planned out in my head …….as I said, the only thing I knew about him during pregnancy (which was when I fell in love with him) was that he was a boy who liked listening to Brian McKnight. Nothing else about him had been planned out beyond that, nor did anything else matter! You take life as it comes to you.

Back then I was a newbie to this world of severe autism and thought maybe I was the crazy one for feeling this way…….but I have now had a few years to mull over these thoughts and am now crystal clear. It is still something I could never do and here is the bullet point list why:

– why would I grieve someone so awesome. Grieving is for when something awful happens like a death….. nothing about Touristo is awful.

– his feelings! I imagined how I would feel growing up having a parent who was so devastated because of the way I am.

– the day he was diagnosed he was still the same awesome guy that I was so in love with the day he was born. I just had new information to help him.

– I am an aspie and know how it feels to be very different and not fit in, especially as a kid. I imagined what it would feel like having my mother grieving for the parenting experience she didn’t have. Kids pick up on that even if they have no words.

I think oftentimes the whole grieving thing is set up around the stage of diagnosis, and whether the diagnosis is presented as something terrible, neutral or good. Diagnosticians have amazing power to use this conversation to set parents up with a much more positive perspective on autism which is empowering for parents and can only lead to positive outcomes for the child.


Legoland, Nagoya, Universal Studios Japan or Tokyo Disney Resort – which one do I think is more autism friendly? – Part 2 – Legoland Nagoya

Legoland, Nagoya

Legoland Nagoya is a near new park having opened mid way through 2017.  I want to preempt this post by saying it is written by someone who is not a Lego enthusiast, and we did visit the park on a week day in winter break (unfortunate timing that couldn’t be worked around).

I have mixed feelings about this theme park, but I lean on the side of recommending as long as you can pick a day that is not a weekend, public holiday or school holiday…..let me explain….

Getting to the park is very easy, with it being about a 20 minute train ride from Nagoya Station with no line changes required.  One of the really cool things about this park is, as you are walking from the station to the park there is an overpass.  On the Legoland side you can choose to either walk down a ramp or go down a slide!  It really sets a super fun tone to start the day!  What is not fun though is the massive queue to enter the park…..on the day we were there, it was about half an hour to get into the park even with pre-purchased tickets. My husband and daughter to one look at the entry queue and both wanted to go back to the hotel to chill.  Touristo and I persisted!  The entrance has not been built to handle the massive crowds that Japanese theme parks tend to attract. So, if you hadn’t pre-purchased tickets online, well then, good luck getting in at all.

Once in the park, I picked up a disability card to help with the queues.  It is a very similar model to that of Universal or Disney, so please check out Part 1 for more information on the process.  The issue here that I did not experience at either of the other two parks was that the park seemed understaffed, so there was not always someone to help you at the express lines.  In the end I ended up purchasing a three attraction fast pass which really helped and wasn’t too expensive.  This turned out to be a lifesaver.

The other big glitch was food.  There are not nearly enough food outlets for the hoards of people that descend on this place in peak season.  The queue for Lego shaped fries just did not move, and when I tried to get a burger and fries for lunch at 11.30am, I was told that the wait was already 1 hour!!!!! I must have looked like I didn’t understand because she then repeated it in English….. I had understood the words coming out of her mouth, it was the concept of waiting an hour for food that had me lost!  So we lived on popcorn for the day, until I got hangry and we left.  Touristo as always was a gentleman, I was the grumpy one.

Now this sounds like we had a crappy day right?  Funnily enough, we still had a lot of fun.  The rides are really cute, and are perfect for the age group of about 2 – 12 years old. The other thing that I found amazing was all of the themed play areas which were phenomenal.  When you have a kid who likes to climb as much as mine, then it was worth the entry fee just for these.  Two of these play areas only had one way in and out, so it also gave me the chance to sit out the front and have a few minutes to myself.

So is it autism friendly?  Yes and no.  If you go on a week day when Japanese schools are in session when it is quieter, then I think it is an amazing attraction for families with kids on the spectrum to visit.  At peak times though…..just don’t.  In saying that though, I am thinking that a lot of the issues I experienced here are really teething issues that will be resolved as the park finds its feet……..I hope.

Tip: They are currently building a hotel on property.  If you do have a junior Lego enthusiast I would highly recommend staying on property particularly if the offer early entry and/or a dedicated entry for hotel guests.  For guests on the spectrum it would be really handy to have a quiet room to retreat to when the crowds become too much.  This is particularly important because the park is not very spread out so even when it’s not a peak time it might still feel squishy to someone who has difficulty with crowds.

Legoland, Nagoya, Universal Studios Japan or Tokyo Disney Resort – which one do I think is more autism friendly? – Part 1

So we have just recently returned from our 5 weeks in Korea and Japan, and first up I thought it would be fun to cover a topic that is very near and dear to my heart….theme parks in Japan.  Whilst on this holiday, our family was fortunate enough to explore three of Japan’s big theme parks and I would like to make it clear that all three cater for people with autism in a way that just doesn’t happen in Australia.  All three were really fun in their own way, but if I had to pick one that catered to my family’s needs the best…….well you will have to wait as this is a three part post.

Now to give you an idea of what challenges Touristo faces in theme parks, the big one is queues. He has very little control over his nervous system and is constantly jumping, wriggling, climbing me, wanting to hold my arms and somersault, and trying to pull through the queues.  He is also a ‘bolter’ with absolutely no understanding of personal danger, so if we are walking around a lot he still has to be in his pram and for shorter distances holding hands.  As he is a sensory seeker, the noise, bustle, smells, and sheer volume of people are not things that we have to consider at theme parks that others may well have to.

Universal Studios Japan, Osaka
We spent 2 days here mid-week and it was still jam packed.  Even on the second day when it was raining, the park was still bursting with people and the lowest wait time I saw (with the exception of the kiddie area) was 40 minutes. Attractions such as the Minions ride and the Harry Potter ride still had wait times of well over two hours and at times, edged toward the three hour mark.

This park is quite small compared to other Universal Studios around the world, and one could argue that it has been under-built considering the voracious appetite for theme parks in Japan.  There are a handful of really mind-blowing attractions such as Minions, Spider-man and Harry Potter, which are genuinely world class, but it is insanely crowded.

Do they have ‘fast passes’?
Yes, but be warned a 7 ride Express Pass will likely cost you more than your admission ticket and should be purchased either before you go to the park, or as soon as you arrive because they do sell out.  We took this option on the second day because even with the ‘Guest Support Pass’, we would not have been able to experience more than two or three attractions.  It is also worth noting that the Express Passes have dynamic pricing, so on days of high attendance they cost more that during low season.

Do they have some form of ‘Guest Assistance Card’?
Yes, and of the three parks that we went to I found the process of obtaining one to be the most simple at Universal.  When you enter the park, approach Guest Services and let them know that one of your party requires support during their time in the park.  On both days at the park I encountered staff who had sufficient English skills to be able to assist me if I was struggling in Japanese.  Staff asked me a few simple questions about what difficulties Touristo might encounter and we were issued with a card to present at each attraction, where you are given a time to return for express entry that is equivalent to the current wait time.  You can only be issued a return time for one attraction at a time, hence why I still alternated the support pass with the purchased Express Pass.

How about the food?
Typical American theme park food plus a lot of character shaped nikumans.  If someone in your party is vegetarian or has allergies, you might want to do some research first.  Touristo’s issues with food are more just ‘self-imposed limitations’ due to sensory stuff, and there was more than enough to satisfy him. Ahhh my boy…….just like his mama at the same age.

How well did this park meet our needs?
Fairly well, but to be able to make it doable and fun (queue wise) it was breathtakingly expensive, and even though it was amazing I can’t say that I plan on returning.  This is partially due to the crowds, partially due to the price and also due to the lack of attractions compared to other major theme parks.  I am hoping to visit Universal Studios in Florida in two years though as it seems to be a more affordable park that houses a wider variety of attractions.

A tip
If you plan on visiting this park, please check out this website   www15.plala.or.jp/gcap/usj/ and never, even go on a weekend.  It is a crowd calendar for Universal and whilst it is in Japanese, I still think it is pretty easy to understand even if you can’t read the language.  We were very constrained in what days we could visit, so we ended up there on a ‘medium’ day.  If you have a choice, pick a day that is in the green, blue or white sections.

If you are planning a visit to USJ and have any questions about disability, please feel free to send me an email or hit me up via Facebook.

Part 2 – Legoland, Nagoya coming soon!

Reflections on our 5 weeks in North Asia

So we are back from Japan and Korea……. safe and sound. Whilst I will be writing posts about the specifics of our adventure at a later date, I thought I would start back with a brief post on a few things I have learned over the last few weeks.

One thing that this holiday was good for was being able to exist entirely in the moment. I switched off from work (which is usually constantly in the back of my mind), dealing with the NDIS (Australian disability funding), therapy, and even this blog which is my hobby. This enabled me to just enjoy the time with my family and reflect on all the different aspects of my life. This has given me greater clarity about what I want to keep the same, what I want to set goals around and what I need to ditch.

Another take away from this trip is my view on severe autism. In my field of employment I spend a lot of time reading and hearing about the difficulties surrounding autism. I have always maintained that I don’t think autism is inherently difficult, but it’s hard not to listen to all the noise sometimes. That is not to dismiss the challenges that some people do face, but rather challenge the generalisation that all severely autistic people are challenging as a rule. After taking some time away, I am more sure than ever that my maternal stress surrounding having a severely autistic child doesn’t come from him. When I stripped away having to deal with the government, school, therapy and trying to fit him into a box that other people want him to be……well we were as happy as clams. He was such a trooper and was brilliant at just getting on with things. With the accomodations I made for him, he did better than most 6 year olds on such a big trip.

Lastly, on the last few days of our holiday I noticed how much my daughter was struggling. We were in Tokyo Disneyland and the Princess was having a ball, but at the same time she was desperately missing her friends. My son didn’t struggle in this way. He is happy as long as he has his family. In this respect I kind of see autism as an advantage to travel.

So I guess these are just a couple of musings about my time away, but will be back shortly with some more specific details about our adventure.

Taking a break…..

I was originally trying to write another post before the end of the week when we depart for South Korea, however between work, packing and grabbing last minute essentials, it doesn’t look like there is much chance of that happening.

On Sunday we explained to the kids that the holiday is happening on Friday, so we have gone into official countdown mode.  Luckily Touristo has a firm grasp on the days of the week, so he gets it without me having to pull out the visual schedule. The Princess is still feeling a little unsure about the whole thing and has requested that we go on a “little plane that is the right size for her because she is little”.  Sigh….this is one of those parenting moments where you just need to lie for the greater good and say “of course my darling, we will go in a little plane”, even though your flight is on the largest passenger plane on earth.  We will board through an aerobridge so she won’t see the full scale of the A380.

Touristo has also been surprisingly easy-going about the packing.  I was intending to do that in stealth mode as I usually do, however he caught wind of my plans and barged in on me when I thought he was in the backyard with his dad.  He just kept repeating “packing for holiday, packing for holiday, packing for holiday”, until I stopped him and explained “yes, mummy is packing for our holiday on Friday. We are going to Korea first, and then Japan”. He seemed happy with that explanation and at no time has he tried to drag the bags to the car, nor has he just tried to throw a random pile of clothes in to expedite the process! Winning!

Anyhow, I shall be taking a break from blogging whilst I am away and will hopefully come back with loads of content in the new year.  I will however be posting pictures, videos and short stories from our adventures on Facebook and Instagram.  Hope everyone has an amazing holiday season and I look forward to coming back a more refreshed person in 2018!

Hotel Review – Novotel Melbourne

So you might remember that about a month ago our family went on a last minute, long weekend away.  I am finally getting around to writing a review of our ‘family junior suite’ at the Novotel after a very busy few weeks.

I have mixed feelings about this hotel but I am going try to be objective.  The entrance to this hotel is simply a doorway leading to an elevator that takes you up one floor to the actual reception area. This is not an issue at all if you are arriving by taxi, but if you aren’t familiar with where the hotel is and you are arriving by public transport, finding it might be a little challenging in the daytime when the neon signage is not as obvious.

We arrived at about 9pm at night and I was hoping to be able to get the kids straight to bed because they were super tired after being at preschool all day, and then rushing to get on a flight.  This was not possible because the sofa bed had not been made up in advance, which was annoying as the room had specifically been booked for 4 people.  In the 30 minutes we waited for the bed to be made up, my children had reanimated and it was difficult to settle them back down.

While I am on the topic of the sofa bed…… Touristo was adamant that he and his dad were sleeping in the very plush king sized bed, so the Princess and I were relegated to the sofa bed (pick your battles and all that).  When the sofa bed was made up it had a wafer thin mattress covering a pole that stuck into my back all night.  All up I totalled about 4 hours sleep, and the Princess was tossing and turning all night too.  As a result we were both tired and grumpy in the morning whilst the boys were feeling very refreshed!  Another very small issue, was that our room faced into an atrium and the amount of natural light that came in was very limited, which I guess could be seen as a plus if you are someone who finds it difficult to sleep in when there is any light entering the room.

The room itself was quite nice, clean, newly refurbished and had plenty of space.  The room service menu was quite affordable compared to other hotels and had some decent options.  I also quite liked the small, indoor pool and spa area which allowed me to get some of the energy out of my little people without having to leave the hotel.

Location is also something the Novotel has going in its favour, particularly for business travellers who value being right in the middle of the CBD.  In saying that though, it is also located very conveniently for tourists with many eateries close by and excellent access to trams.

I think if my husband and I had of been travelling as a couple without needing a second bed, my review would have been a lot more positive as we would not have been waiting for a sofa bed to be made up, and the king sized bed in the room was actually really comfortable.  Another thing that affected my opinion of this hotel is that the cost of this hotel does not match the level of quality.  If we had of been paying for the room, Trip Advisor was quoting nearly $400 per night (AU) as the best price on the weekend we visited, when substantially nicer properties cost less (e.g. most accommodation in the Crown complex, and the InterContinental were cheaper and far nicer).

Overall, it’s a perfectly comfortable mid-range hotel if you are travelling as a couple and if you can get a good rate.   If you aren’t getting an absolute bargain on rate, I would shop around as there are some much nicer hotels in Melbourne in that $300 – $400 (AU) per night price range.

In other news, I am in countdown mode to our big holiday to Korea and Japan in 9 days! Very, very exciting!  If you want to follow along, please check out my Instagram and Facebook for far more of an insight into our travels!

See you soon.


Look at me when I am talking to you….. otherwise it’s creepy

So today I thought it might be fun to talk about my own experience as a person on the spectrum, opposed to being a parent of someone on the spectrum. Throughout my life I have been called a lot of different names due to my autistic characteristics, but this was the most humiliating….. “creepy”.

I was 18 years old and I had just left high school. My father had helped me obtain an office traineeship with a contact in the industry he worked in. In this workplace I had already been the subject of bullying by other young women who thought I was a ‘snob’ because I couldn’t manage small talk and didn’t understand their interests, but that sort of stuff I was used to from high school (sigh). No, this time the bully was a 60ish year old Managing Director who should have had more sensitivity.

To give you an idea of 18 year old me…… I was super smart, hard working, a great problem solver, a quick learner, reliable and honest. I also happened to be very awkward, socially anxious, could not look people in the eye or make small talk. I generally just answered people with as few words as possible, and never initiated conversation. Now as a 35 year old woman, I still feel exactly the same way on the inside BUT I can fake these skills pretty well on the outside.

So back to this Managing Director…. One day he called me into his office just to tell me that I needed to look people in the eye when I spoke, otherwise it was too creepy. I was shattered! I thought I was doing pretty well to have made the adjustment from high school to work so quickly. Anyhow…… I was desperate to fit in so I tried my best to change this about myself. I started off by making eye contact for just one second, gradually increasing the duration of eye contact. The big problem with this was that it has never become automatic, so I am concentrating of making eye contact instead of listening properly. It’s ok if I am having a casual conversation, but if it’s something complicated or technical I have to look away to listen properly.

These days I work in an environment that accepts my quirks and just lets me be myself. It is much less tiring. I have largely gone back to not looking at people directly when they speak (depending on the situation) and it is freeing. I also don’t try and mask things like my stimmimg, my routines, repetive behaviours or fascinations. I feel as though I deserve the right to be an authentic version of myself, and feel comfortable with who I am. I also think that rather than expecting autistics to change their ‘different behaviours’ via therapy, it should be largely up to the rest of the world to accept people’s authentic self as long as their authentic self isn’t hurting anyone. Just so I am clear, I definitely don’t think all therapies and interventions are bad…. for instance my son has been non-verbal until recently where is now just starting to talk. This skill is super important, as are self-care skills that an OT might help with. But all of the other stuff like stimmimg, routines, eye contact, oddly specific ways of making grilled cheese……just accept people for who they are. Appreciate the diversity in life.

Would love to hear how others feel about this….


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.