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.

 

 

You can’t preempt everything…..

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

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

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

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

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

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

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

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

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

Words lie…..actions, not so much

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

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

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

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

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

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

 

Difference…….look below the surface

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

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

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

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

Back to happy programming later.

Terminology in the Autism Space

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

‘Person with Autism’ v ‘Autistic’

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

The term ‘special needs’

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

The terms ‘high and low functioning’

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

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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.

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