A look inside my son’s amazing autistic brain.

 

So much has happened in just 4 short days since I wrote my post on Harley’s struggles with his OCD. Some of has been a struggle to get through but most of it has been an amazingly eye-opening experience for me! If you’ve only just landed here for the first time, go and have a quick read of *THIS* to catch up. It’s ok…I’ll wait :)

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But today’s post is not going to be about his OCD as much as an insight into the amazing space that is the autistic brain.  

So…..the very next day after I published that post, I took my boy straight to the GP to get a referral to a psychologist (amongst other things).

That morning, I dropped Ella and Lucas to school then continued on to the surgery with Harley. It went ok I suppose, but I found it really difficult to sit there in that Doctor’s office having to talk about my little boy in the third person even though he was sitting right beside me. He’d clamped his mouth shut and was refusing to answer the Doctor’s questions or allow him to examine his hands.

(Which probably went in my favour to be honest – the Doctor could see that he clearly wasn’t coping and it backed up everything that I’d been telling him).

Long story short – we got the referral and headed back to school to drop Harley off since he’d only missed an hour of lessons. But even though we’d already discussed exactly what was going to happen later that morning, he wasn’t having a bar of it. He climbed out of the car – screamed at me,  kicked me in the shins, punched me in the stomach and ran off at full speed for the big man-made pond that is on the school grounds.  The school is situated in a rural setting and although this pond is securely fenced – he told me as he ran off that he was going to throw himself into it, so I was concerned that he would come good on this threat. He is extremely unpredictable and I know that despite my best efforts – sometimes I just can’t stop things in time and sometimes he does really stupid things. Especially when he’s mad.

I had heeled boots on that day and knew that there was no way that I would be able to run after him to catch him so I did what I could – I went to the front office to summon some extra help.

The head of junior school was pulled out of a meeting and she tried her best to talk him back but he wasn’t playing ball. He ran and ran for what seemed like an hour (but was probably nowhere near that).  Most of the adults that had come to help also tried their best but none of them could successfully get him to come back either. Because every time that someone got close enough to catch him, he would take off again like a timid little rabbit. And he’s fast!  They even tried sending a golf cart after him and when that failed as well, one of the groundsmen finally managed to grab him. But only when he tripped over…sigh….

And the most surprising part was that after all the drama – he happily walked back over to my car to say goodbye to me holding hands with both the Principal and the head of Junior school!??

He apparently went easily to his classroom and ended up having a great day. He baffles me sometimes. He really really does.

Later on that evening, I sat down on the side of Harley’s bed when I knew he was in a much calmer frame of mind, and we chatted about what had transpired that day. I asked him why he ran off at school and his answer surprised me. He said that he thought that he’d be in trouble for being late to school. Wow….THAT hadn’t even occurred to me….I thought he just didn’t want to go. And he explained that seeing all the other adults in authority positions at school also trying to catch him made him run more because he thought he was majorly busted.

And being so totally aspie – the “rules” had been broken in his opinion (being late to school) so he feared a backlash as a result.

It made much more sense to me when he’d put it like that!

I also asked him about the ‘voices in his head’ that he’d told me about a few days earlier and told him that I was concerned to find out that he was hearing things.  I asked him what the voice sounded like and if it was a child’s voice or an adults voice. He replied that it was neither and that it wasn’t actually a ‘voice’  but his brain ‘talking’ to him. I breathed a sigh of relief when it finally dawned on me that he was unknowingly explaining the process in which his brain filters his thoughts.

And the ‘voice’ that he speaks of isn’t another personality so much as it is him reasoning with himself and working through things in a visual way. He told me that he needs to see pictures in his head to understand things and that when he doesn’t have a picture – he freaks out and panics. Which is exactly what happened that morning. He didn’t have a script in his head for “late to school” because it has never happened before. He couldn’t ‘find’ the appropriate picture (or film strip in this case) in the filing cabinet in is head so he was unable to predict what might happen next.  And that scared him. He doesn’t like new situations that don’t have clearly defined endings and he is a slave to his routine and thrives only when it is in place.

So what he was actually explaining to me literally blew me away! I was so fascinated to learn this , and it also helped me to understand why visual social stories work so well for him. Because he knows what to expect even though he hasn’t necessarily already got a file on that situation in his head, he is able to place one there with the help of the social story. And THAT’S why our trip to America went so smoothly. I had tried to predict every possible scenario and written a social story for it. Nothing was a surprise and even those I forgot to write about were ok because he knew that everything else had been covered.

Harley literally blows me away. Here’s another amazing fact for those who haven’t had much time conversing with a high-functioning child on the spectrum: Conversations like this don’t exactly flow as easily as how you’ve read it in this post.

Often time,  I have had to really learn to listen and learn how to talk to my boy in a way that he understands it.  He doesn’t respond to some of my questions in the way that a typically wired child would, he tells me facts that I have to piece together until I have a clearer picture in my head. And these facts are often all out of sequence and hard to follow at times. And this is where “Theory of Mind” (ToM) comes into play.

ToM is something that individuals on the spectrum don’t possess. Explained simply it means that they assume that we know exactly what they are thinking at all times. They assume that other people can ‘read their minds’.  It’s why a conversation with Harley can jump from one topic to another and back again in the space of two minutes with him giving no indication of how his thoughts got from one place to another. Because he lacks ToM – he believes that I am following his thought processes the whole way through.

Simply amazing.

This kid is totally amazing. He blows me away and I wouldn’t have him any other way :)

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22 thoughts on “A look inside my son’s amazing autistic brain.

  1. Oh wow. So great, this will probably open up possibilties for you to make sure this never happens again.

    All you need to do is help him make a visual story for things that haven’t happened yet.
    You need to make a visual story for him, of how he can make visual stories to explain things he doesn’t know about yet.
    He can talk to you. He can draw pictures of what you tell him. He can get pictures off the internet, or whatever would work for you.
    And if his visual story is missing something, he can complete it. Himself.
    He can show it to you… and you can make sure the end is what it needs to be.

    Now, will he do this at his age? Nope. But he can start, and eventually…. he will either do it himself, or not need them any more.

    But it starts with understanding. And yours seems to have increased, thanks to this doctors appointment.

    • You know, I do honestly realise how fortunate I am that my child is able to speak to me. It may take a while for him to get me to understand and for him to be able to explain himself properly but this is definitely one of the perks of high functioning autism.
      I think your idea of getting him to do it himself is magnificent and I will be trying that out with him for sure! Thankyou!!

  2. Hi Fiona,
    Thank-you so much for sharing your experiences in such a candid way. I stumbled across the blog the other day and have read quite a few of the posts. As a teacher I have had a lot of interactions with ASD students as a casual and regular teacher (and will have at least 3 students in my class this year who are on the spectrum). Our university training is disgustingly deficient in even attempting to give us skills and methods to prevent or handle situations that can result in the meltdowns that some ASD children have. We are expected to just figure it all out on our own. Being able to share your experiences from the point of view of a mother, not an educator, and to share your realisations and the wonderful ‘aha!’ moments that you and your beautiful children have is wonderfully informative. You are educating the educator and I thank you for it!
    This particular post reminds me of a past student who had no diagnosis of ASD but certainly shared a lot in common with Harley when he went into a meltdown and being able to read about Harley’s explanation after the fact has given me a completely new perspective on what was happening. So again, thank-you! The more understanding everyone (not just teachers) has about people on the spectrum, the better life will get for them, so I hope you won’t mind me sharing your blog amongst my friends?

    • Oh aren’t you kind! Thank you for your encouraging comments :)
      When you wrote that the more understanding that everyone has on ASDs the better – it pretty much describes perfectly why it’s important to me to write about this stuff in my blog. I want to get as much info that I can learn from my son out there in the hope that more and more kids get the benefit of knowledgeable teachers and members of society in the future. The ASD kids these days are in a better position than they would have been even as recenty as 10 years ago and my hope is that ASD kids in school 10 years from now are even MORE understood :)
      I’d be really honoured if you shared my blog….wow…thanks so much for even believing in me :)

      • The more I read, the more I begin to understand my own experience with ASD students (and therefore I’m learning what I potentially could have done better). It’s arming me for the future :)
        I’m about to start working in the UK for a few months and have a permanent job until Christmas with students the same age as Lucas. As I said, 3 of the kids are on the spectrum and I have one student with Downs Syndrome so I’m reading up what I can so I’m prepared to help them and this blog is one of the best resources I’ve found. It will also be interesting to see the difference between in school support in UK vs. Aust. I have a full time teaching assistant and a part time teaching assistant to help plan for and teach the class, but unlike Australia where a teachers aide is merely another adult presence with little training and few responsibilities away from their assigned child, the TA’s here are fully trained and are able to have duty of care and teaching time with the kids. It means the ratio of students to “teachers” will be 10:3 or 15:2 which will hopefully open a lot more doors for personalised learning and quieter/less crowded learning settings for the kids with sensory issues. I’ve only read back a couple of months so far, but I wondered if the school had provided Harley (or Lucas) with an Aide and what your thoughts (and Harley/Lucas’ thoughts) about them were?
        Please keep updating and sharing! By sharing your experiences you are providing a hugely positive and insightful resource for people like me!

        • There is a lot that I can tell you, I will send you a personal email (I won’t write anything about my kids school on a public forum). But yes, they do have support though not a lot I’m afraid :(

    • This reply just brought tears to my eyes! Fiona, we will probably never know how far-reaching the impact of your experience will be. You have such an incredibly strong voice of real-life experience that is helping so many other people – beyond your wildest imagination. :)

  3. I agree with all the comments here…this is an incredible look into his thoughts and that incredible brain of his. And I agree that a whole slew of social stories may be the way to go, not only in helping through potential situations (like a social story for “we are going to school late today and it’s okay”) but for also teaching flexibility (like “we’re going to the store. They may not have the x thing that we want. I will be disappointed but I can choose something else.”)
    You are an incredible mom for spending the time to figure this out for and with him. <3

  4. Love it, Fi! When you said “Often time, I have had to really learn to listen and learn how to talk to my boy in a way that he understands it. He doesn’t respond to some of my questions in the way that a typically wired child would, he tells me facts that I have to piece together until I have a clearer picture in my head. And these facts are often all out of sequence and hard to follow at times. And this is where “Theory of Mind” (ToM) comes into play.” That is EXACTLY how it is with Sketch. Dash too, but he gives me more information, more easily than Sketch where it truly is a puzzle to piece together, a puzzle that is missing a lot of pieces. It is amazing to get glimpses in their minds…gives me chills (the good ones ;)

  5. The day just transformed itself from one of utter chaos to complete sense, didn’t it?! That you were able to draw this information from Harley and share it with all of us is just a gift! Understanding takes away so much fear and gives us all new ways to cope, teach and learn. Thanks Fi.

  6. This is seriously amazing. Thanks again for sharing your insights. It must have been a very tricky morning catching him!
    I send you all extra love and hugs all the way from Japan :-)

  7. As I read this post again I have a very strong movie in my head. I can see every detail of what you have written here Fi because I know you so well. I also have a different looping past memory replaying over the top. It’s of my Mom chasing me around the block. Down to my hiding hole under my tree at the brook. She would stand on the other side of the brook. I would jump it from a height and crawl into the growth. She would call to me to make sure I was where predicted. Then she would wait it out. I wasn’t there the one time that I did a runner, so she panicked . After I had processed and walked home the police were there. That terrified me because I thought they would take me away from my Mommy. It wasn’t my Mom I was needing to process it was everything else. I wanted to walk to London and I told her that too, but it started to rain and my white tennis pumps got wet. I wasn’t supposed to wear them when it was raining so I had to go home to change my shoes before continuing my walk. I hate London now, you know this Fi, but in my understanding back then it was the place where dreams would come true. Believe it or not my idea came from seeing a pantomime of Dick Whittington and his cat. Very visual, pictures, film strips, imaginings in full glorious technicolour, even overlays of images transposed and merged over life. I love who you are and I love that you listen you are the perfect Mum for you beautiful kids. So many people don’t listen to adult aspies or thank us for sharing our stories, that makes us feel rejected when we try so hard to help but can’t always find the words. You are such a precious gift my lovely friend I’m never afraid to comment on your blog becasue I know you get me, accept me and love me just as I am.
    You know I am praying and pondering these things.
    I love you and your kids so very much.
    Lees. xxxx {{{{HUG}}}} X

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