I’m back to blogging, here’s why…

I’m back to blogging, here’s why…

I have finally reactivated my blog after a years’ hiatus. I think I exhausted myself by throwing myself into this project, too much, too soon. Like most things, I burned myself out and gave up. I find myself doing that all too much in life; I find a project that I am excited about and become consumed by it. It will be my entire focus, it’s all I live and breathe for weeks, maybe months. Then one day, I wake up finding myself completely sick and tired of it, so I throw it all away, usually never to return.

This time, I feel a renewed sense of purpose. I was contacted by a friend of a friend who’s daughter is 13, autistic and suicidal. She was hoping I could speak to the daughter, and perhaps mentor her through her difficulties. Of course I jumped at the opportunity, being a teenage girl on the spectrum was immensely difficult for me, and anytime I get the chance to help out a kindred spirit I welcome it.

But I started thinking… this is the second time I have been reached out to for this purpose, and I pretty much live in a bubble. I don’t really have many friends or much of a social life (by choice), so my reach is very limited. Even so, within my tiny bubble I have encountered two suicidal, teenage ASD girls who find the struggles of dealing with high school, teenagedom and the spectrum entirely too much, and would prefer to end it all. I started thinking how many more of you are out there, going through hell, all alone?

I wanted to end my life at 13. I endured years of bullying… I even received a death threat in my locker in Year 8. I had struggles at home, a stepfather I didn’t get along with. I was miserable at school and at home, and at night would lock myself in my room and dream of ways I could end it all. I was alone and scared, and felt it would have been easier to just not exist. Life was too hard, every day was pain, like I was crawling over shards of glass to reach the end, only to wake up the next day and do it all again.

But I did it. I somehow made it through and you know what? As soon as High School was over, I never saw any of those girls again. Years later, some of my bullies even added me on Facebook and chatted with me as if nothing happened. The more thoughtful ones even apologised for any pain they had caused. We all agreed that we were kids, too immature and careless to understand the pain we caused each other.

My home life changed. I grew up and moved out. As an adult I developed a closer relationship with my mum. Once I was out of the house and away from my stepfather, he was no longer putting a strain on our relationship and mum and I became best friends.

And life went on. I had some fantastic experiences, I fell in love, I had a career, I bought a home, I travelled. There were still struggles, life is filled with them. But with each struggle, I grew stronger, wiser. I learned how to better cope with situations. Things that once debilitated me, suddenly didn’t feel so overwhelming. I slowly learned how to create my own happiness.

Life is like a video game… you start off as a low level character, earning XP and levelling up by exploring and battling mobs. It’s a grind, and it’s hard… enemies hit you hard and you don’t have any gear to help you. But if you keep going, you level up and get better gear. Things become so much easier when you’re higher level, perks and talents that help you in the game are unlocked.

If you quit the game at level 5, all you’ve known is how hard it all is. Keep pushing. The levels you unlock later are worth it.

xo Catherine

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Girls on the Spectrum – Wearing Masks, Observing and Pretending

Girls on the Spectrum – Wearing Masks, Observing and Pretending

The various reactions to my blog were really encouraging. I had a lot of past and present friends and even a few strangers reach out and contact me with some really positive things to say. The most surprising comments came from my school friends:

“Thanks an insightful read, I never realized how difficult you had found things you always seemed to take everything in your stride…”

“…we had no idea it was so hard for you, you were definitely different, but quirky and an individual and I thought you seemed confident and smart!”

“From an outsider at school you seemed confident and very intelligent!”

“…you know I would of never of picked this at all as kids.”

“I do remember in the past that you were like a chameleon always changing very quickly and very dramatically..I wish I had realised how exhausting this was for you at the time..”

“…you were always a guaranteed laugh and interesting conversation. I never so much saw the smallest hint of any of what you’ve dealt with all that time.”

A common theme in these comments is that people had no idea how I was feeling on the inside, and that I seemed to do a good job of convincing people that I was confident and self-assured, even though I was putting on an act most of the time.

This made me think about the way that girls behave on the Autism Spectrum. There is a definite gap between the behaviour of boys and girls with ASD, which is why it is often harder to recognise and diagnose girls on the spectrum and why some girls with ASD go undiagnosed altogether.

“We think the social difficulties in some girls with autism may be less obvious. Some women with autism describe a strategy of copying somebody. They pick somebody in their class or workplace and they just copy everything about that person: how they dress, how they act, how they talk.” – quote taken from an abc.net article by Francesca Happe, Professor of Cognitive Neuroscience at the Institute of Psychiatry in London.*

This quote resonated with me, as this is what I have done my whole life. I struggled socially, as I felt so uncomfortable and nervous in my own skin, that I emulated the habits and behaviours of other people. I did this to try and fit in, to make myself not stand out as different, and to try and find an identity for myself. Little did I know that my real identity was being squashed this entire time – more on that later.

It took me many years to learn how to wear my masks. I have memories in kindergarten and early school of wandering around at recess and lunchtime by myself – not really knowing how to include myself in the activities of other children. Boys were easier to play with than girls, they were very game/play focussed and didn’t spend as much time discussing things that I did not understand. I did not care about the things that girls talked about, they spent a lot of time talking about boys, music, fashion, current pop culture, and often speaking negatively about other children. I did not understand how to include myself in these conversations. Mostly because I did not care about those topics, I had little interest in boys at this stage, I did not care about fashion or music in a broad sense. How could I connect with these girls on these levels? I couldn’t, so I often didn’t.

I remember connecting with my brother from a young age. My brother was very technical, into computers and gaming and lego and Star Trek and most things that boys enjoy doing. These are things I understood. Star Trek is set in a science fiction world with interesting alien characters. I connected with the characters of Spock and Data, one Vulcan and one Andriod, both characters intrigued and confused by humans and human interaction and on a constant quest to discover their humanity. How ASD is that? Also, in the Star Trek universe, humans and technology are as interconnected as fish to water. The thought of this was incredible to me. Computers are logical and follow a set process that I can understand. I am comfortable with computers. My first word as a baby was computer. What a world to live in! My brother and I bonded on these mutual interests and our relationship was easy. Looking back I feel like who I was with my brother was the most true to my authentic self.

My relationship with my sister, however, was much different. It was harder from the outset, as I was the annoying little sister to a teenage girl who read her diary, played dress up with her clothes and wore her makeup. The age difference alone was a hurdle to our bonding, but the fact that I destroyed a lot of her things was another. I remember she had a case filled with Barbie dolls and clothes that she absolutely loved. She was saving them for her own children. As a young child I would cut their hair and dismember them, not really understanding how to play with them like girls normally do. As I got older and my curiosity and social skills developed somewhat, I would instead practice social interactions with these dolls. I would watch and observe different people and social interactions at school, at home, and replay them with dolls. I would wear my sister’s clothes and put on her makeup and read her diary and pretend I was her. I didn’t realise this at the time, but looking back this was the beginning of my learning and rehearsing my real world reactions and interactions.

When I was young, I idolised my brother and we bonded over similar interests. As I grew older, my idolisation switched to my sister as I became more aware of my desire to fit in with other girls, as a girl. Playing video games and enjoying time on computers was not a common thing for a girl to do in my formative years, and I would get teased about being a “computer nerd” and a tomboy (now that video gaming is so prolific and popular among male and females alike, I like to think I was before my time :P). I soon realised that if I was going to go under the radar, fit in and not be different to others , I would have to learn to be a girl. This would mean changing the clothes I wore, wearing makeup, doing my hair differently, whatever the girls around me did, I copied.

I became very practised at copying over the years. Identifying the attributes I perceived I needed to fit in became so natural to me, like breathing. I would observe each person in a group, and learned to tell different personalities from one another. In order to interact with each personality, I would mimic their behaviour to not only hide my discomfort at social interaction, but to also on some level make them comfortable with interacting with me. My anxiety was not only for me, but for the other person too.

Using this method of interaction was fine one on one, but in groups was very overwhelming. Out of all the personalities to emulate, which one did I choose? Did I be the overtly confident popular child? The quiet, shy one? The funny one? I think this is why particularly ASD girls find it difficult to engage in group interaction. Not only is there an overload of sensory stimuli to process, there is also the internal struggle of knowing which mask to wear, who to emulate for a successful social interaction?

I think the common theme identified in the comments from my school friends above is a pretty good example of the different masks I wore to fit in. Some described me as the class clown. Others identified me as intelligent and confident. Nobody really saw the anxious, socially awkward girl I was inside. Judging by their memories and recollections, I must have done a pretty good job of pretending.

Now, in my 30’s, with a deeper understanding of who I am and my diagnosis, I am more comfortable in my own skin and have identified who I really am. I am the tomboy computer nerd. I wear comfortable, usually dorky and unfashionable clothes. I wear my hair in a ponytail every day and do not wear makeup. I don’t really put much effort into my appearance, I like to be comfortable and if this means not conforming to social trends and fashions, who cares?  I like my circle of friends, mostly online like-minded gamers. I like to make my friends laugh. I like to live a quiet life at home and spend a lot of time alone. This is who I am, and who I am happiest at being. I am actively trying to stop wearing my masks, as now the pressure is off to fit in. I am unique and ASD, and I can be who I really am and the the friends I make while being myself appreciate me for being me ❤

 

* More info can be found at: http://www.abc.net.au/radionational/programs/allinthemind/why-autism-spectrum-disorders-are-under-diagnosed-in-women/6570896

 

Overloaded! Social overload firsthand.

Overloaded! Social overload firsthand.

I had another topic planned for today, about the fantastic response I have had so far to my blog – including many kind words from old school friends who recounted memories of me from those days, but I’ve had a busy day so I’m feeling overloaded. I figured what better time to explain what it’s like for an Autistic person during sensory overload!

Today was nothing out of the ordinary for a neurotypical person, I had a visitor for the afternoon. I spent several hours having a conversation with this friend, followed by a gentle walk with my two dogs.

Easy! You say. No! Bad neurotypical!

While I had a lovely time that I wouldn’t change for the world, I am definitely feeling the strain of interacting on a social level for an extended period of time. I’ve put myself to bed to have a rest as I feel exhausted. I knew it was coming when my eyes began to feel heavy and I started yawning. The tiredness fell over me like a heavy blanket being draped over my shoulders. My eyes began to unfocus, and I had trouble keeping them focused. They began to glaze over and my mind wandered. I tried to fight the fatigue – I never want to be rude and have the other person feel like I am getting bored of their company – but fighting it is useless. My friend’s words were sounding like a foreign language, even though minutes prior I had no trouble understanding her. My mind scrambled to put together the words and understand what was being said. Instead of responding with a coherent sentence I began nodding and “uh-huh”ing. I struggled to finish the conversation and went into my study to have a break, alone.

Luckily my friend understands my Autism and was unfazed by my behaviour. She busied herself with her phone, doing some tasks while I went to the sanctity of my computer. Technology and rest from human interaction is my way of relaxing and refocusing myself, so I spent a few restful minutes on my computer. After ten minutes, I returned and was able to continue.  It wasn’t long however, until I began to feel the effects again. I explained to my friend that I had to rest, and thankfully she understood.

I am now in bed and overloaded. What is being overloaded? According to the Wikipedia definition: “Sensory overload occurs when one or more of the body’s senses experiences over-stimulation from the environment.”

As Autism is a sensory processing disorder, this happens OFTEN. For different individuals on the wide spectrum of ASD, it can be caused by a wide variety of things and happen over seemingly nothing to a neurotypical person.

But what does it feel like? Right now, I am having major issues concentrating. I am often stopping and staring at my phone screen, forgetting what I am doing and the point I am making. It’s not so bad right now as I can scroll up and read what I have written previously and remember the point I was trying to make, but what if I was talking to someone right now? I can’t scroll up during a verbal conversation with someone, so when talking during sensory overload I tend to trail off mid-sentence and completely forget what I was talking about. This can happen several times in a SINGLE SENTENCE! It’s frustrating. I feel confused and my brain is foggy. My eyes are blinking a lot because I am so tired. I am irritable and grumpy – if someone was to talk to me right now I would probably snap at them or simply not answer them. I need peace and quiet.

During sensory overload, everything is intensified. Noises sound louder. Light is brighter. I am easily confused. Repeating sounds or noises like a window blind banging in the breeze is intolerable. What normally may be somewhat tolerable for me is now seemingly right in my face, my ears, my head. Not only am I dealing with my brain fog and confusion but WHAT IS THAT NOISE?! My blind is actually banging right now and it is driving me crazy. I should fix it. I have the urge to yell at it.

Back to my confusion… I lost my train of thought. All I want to do is sleep right now. It’s started raining outside, it sounds beautiful. It’s very calming. I love the sound of rain. The blind is banging again. More irritation.

You may be able to tell how jumbled my thoughts are, and how any outside noise or distraction will violently yank me out of my sleepy state of confusion. Luckily, I recognised the signs early and took myself off to bed, where I can lay here alone and in the dark and take as long as my system needs to calm down. There is no set time to recover – it varies. It will depend on the amount of time I spent overloaded, what I was doing to cause it and how early or late I realised it was happening. The biggest thing for me is how quickly I act on my Overload Plan. I have capitalised it because I feel it is important and that every Autistic should have one. My personal one is:

  1. Go somewhere quiet. This is usually my bedroom. I like to have my quiet place to be the same every time. I like the comforting feeling of knowing I can relax there with no surprises, no sudden pop ins, no interaction, no noises.
  2. Go under weighted blanket. Depending on how severe my overload is, I may skip this step. Sometimes just my normal bed blankets will be fine, but I have to be under something. For me, the more overloaded = the more weight needed. At my most severe state of being overloaded (the point before the dreaded Meltdown), a 70kg person laying over my chest instantly calmed me.
  3. Take phone/iPad. This is very important. Without something to read/browse/occupy my thoughts, I feel panicked and it makes me feel worse. I need something to focus on. This may not be the case for everyone, but it works for me. I usually browse Reddit and look at pictures of dogs (dogs are my happy place). Without this important step, the other steps wouldn’t work as quickly.

It will take some time, but eventually I will start to feel the energy coming back. I will begin to focus more. My mind clears. I feel less irritable and frustrated. I begin to relax and feel a bit more clear. The weight is lifted from my eyes, my shoulders… I start to feel like a normal(ish) human being again.

It is so important that those early warning signs of overload are recognised. Did you recognise them? For me they were my eyes drooping, yawning, blank staring, eyes unable to focus. My body may have slumped due to the weight and tiredness I felt and I started forgetting what I was saying mid-sentence. I was visibly confused and out of it.

If you are the parent of an autistic child, your child will have his or her own set of signs that you will need to learn so you can identify it early. Make an Overload Plan so you and your child know exactly what to do to calm them down before we venture into dreaded Meltdown territory.

If you are autistic yourself, it is perhaps more difficult to recognise sensory overload in yourself then it is for a parent to recognise it in their child. We are often not that aware of ourselves or our behaviour to realise that we need a break and a rest. I sometimes push myself too far, further and further into overload, simply because I’m too busy or distracted by what I’m doing to recognise the signs. This is especially the case if I’m playing a high stress video game. Often I’m so immersed in that game that I will refuse to acknowledge that I need a break. But I like to think of it this way: the quicker I recover, the less time I am wasting being overloaded and in bed and I can then go back to having fun!

I hope this has been helpful. Writing while overloaded was a challenge! Time for a well deserved nap, I socialised well today! 😀

Edit: on reflection I realised I should clarify that my sensory overload today was a result of social overload, therefore my symptoms were different to other kinds of sensory overstimulation like going to a busy and noisy shopping centre. I will address these different types of sensory overload and the effects they have on me in future blog entries. To ensure I give an authentic and accurate description, I will wait until I am experiencing them to write about them. ❤

What my diagnosis meant to me

What my diagnosis meant to me

My entire life I knew I was different. When I was little I used to dream about aliens arriving in a spaceship and taking me away to my real home world. I felt that when that happened, I would finally understand why I felt so different to others and so alien in my own body. I used to write poetry about my inner torment and my struggles to understand why it seemed so easy for people to just go about their lives; interact and play and work while for me it was a daily struggle. I would watch my friends play with each other and talk to each other like it was the most natural thing in the world. When I would try join in, I felt my own motions were stiff and pronounced, like I was a bad actor. I would watch the other girls and how they spoke to each other and joked around and had inside jokes that I never understood and when I tried to join in, they looked at each other and smirked. I never understood why. I assumed that they knew I was trying too hard to fit in and they must have found it amusing. The girls would play cruel games when were in a group. Everything would be normal one moment and suddenly one of them would yell “Now!!” and they would all run away from me, leaving me standing there stunned and alone and totally confused as to what I had done or said to provoke that reaction.

High school was much, much worse. The social interactions were more complex and my confusion increased. The bullying was almost constant from year 8 until the year when most of the bullies graduated, and was not only verbal and mental but physical as well. If I feel up to it one day I might post more high school but they are not memories I like to revisit.

Struggling so much to make and maintain friendships, misunderstanding simple social cues and having to watch and learn and emulate behaviours is exhausting and depressing. At age 14 I was diagnosed with Depression. Over the years I saw multiple psychologists, psychiatrists and doctors. I talked about everything that I struggled with – friendships, school, home life, my relationship with my family members. The word Depression kept coming up, over and over. I was taught different ways of dealing with it. I was prescribed medications. I think I’ve tried every single anti-depressant in existence. I still dragged myself through life, struggling at every turn.

I made terrible life decisions. After school I turned to drug use. For a time I didn’t care about how empty I felt, for the first time in my life I actually felt free – but only while I was using drugs. Afterward I felt even worse. After some terrible experiences I stopped using drugs and focused on my career.

My working life was simple for a time. I showed up, worked hard and went home. I was young – had just turned 20 – and had the energy to burn. Over time, that energy diminished. I was successful at work – promotions were regular and my bosses were impressed with my work ethic, but personally I was fading. My stamina drained and even showing up at work every day felt impossible. Personal relationships suffered. Everything became difficult again. I couldn’t remain in a job or a relationship for longer than a year. Looking back I think it was because with every new job, every new relationship, I became a new person. I remember explaining it to my sister like I was wearing masks, a new mask for every role I had in life. I would pretend to be the person I thought was wanted in that situation – the ideal worker, the perfect girlfriend – but I couldn’t maintain those roles as they were not the authentic me. I didn’t even know who the authentic me was, it’s like the real me was locked in a safe that I didn’t have the the combination to.

One day, after over ten years of faking being a responsible adult, my body stopped. I could barely get out of bed, I was sleeping whenever I wasn’t working, my health was failing. I went to the doctor and was tested for everything – iron deficiency, sleep apnea, AIDS, diabetes. Eventually my body just stopped. I was diagnosed with Chronic Fatigue Syndrome and was forced to quit my job. For about a week I just slept, non stop. I was still constantly tired no matter how much I slept. After that first week I could get up in the morning, have breakfast, sometimes shower, and then had to go back to bed for the rest of the day. It was like this for over a year before I saw signs of improvement. Then my mother was diagnosed with cancer, and I deteriorated.

As part of my Chronic Fatigue treatment, I was advised to see a Psychologist or a Psychiatrist to talk about my personal issues. I saw both. After one hour long session, my Psychiatrist diagnosed me with Borderline Personality Disorder or related Personality Disorder. Apparently this was good news? I was encouraged to learn about this new diagnosis. I did some research online and learned some things that did not make sense.

For those of you not familiar with BPD: https://www.sane.org/mental-health-and-illness/facts-and-guides/borderline-personality-disorder

Apparently this could be cured. With treatment and counselling, Personality Disorders were not lifelong. This did not sit well with me. Not because I didn’t want to be cured – I knew my problem was not curable. This was who I was, not who I became. I was born like this and can remember being different from a very young age, my problem was not a result of trauma or abuse in my formative years, my trauma and abuse in my formative years was BECAUSE I was different.

My sister recommended a Psychologist that worked in the same building as her son’s Occupational Therapist. Jacquie was warm and caring and understanding and I felt better after each session. She understood me on a level that no health professionals had before and I finally felt more positive and again, I started to improve. Then my mother died.

 

-Game error: life.exe has stopped working-

Fast forward 6 months. I moved in with my sister because I am unable to look after myself while coping with the loss of my mother. I didn’t know it at the time but Mum was my Special Person (more on that in another post to come) and losing her felt like I lost a part of myself that I could never get back. After an incredibly challenging time and a trip to the hospital it was decided that I needed full time support and my sister wanted me to stay with her. I feel terrible about this time, I was not a nice person to live with. I was harming myself constantly, I was emotional, moody – my poor sister was not only dealing with her own two kids, one diagnosed ASD and one undiagnosed at that time – and me as well. I don’t know how she did it sometimes.

One night we watched a film called Temple Grandin, about the scientist and autism advocate’s life. In the film, the actress Claire Danes (playing Temple Grandin) explains that she “sees in pictures” and examples would pop up on the screen of her thoughts assembled in a series of pictures. I was intrigued. “Isn’t… isn’t that how everyone thinks?” I asked my sister. She told me according to to Dr Grandin (who has studied this for most of her life) most people think in verbal logic, math or music or visual terms and rattled off a few examples of different types of thought. I explained to her that I saw in my head exactly what Temple Grandin saw – pictures. I gave her some examples of my types of thinking and one of them was how I think when I play pool. When I am lining up a shot, I can actually see lines in my head of the direction the balls will travel based on the angle of my cue. After living with me for some weeks and based on this new information, my sister recognised similarities in my behaviour to her own Autistic son, and suggested I take an online test for Autism just out of interest.

S C O R E S
If you scored…
Then…
34 & up: Autism likely
30 – 33: Possible autism
0 – 29 : No autism

I scored 42. Encouraged by this possible answer to my lifelong question of Who the Hell am I and Why am I so Different? my sister called my psychologist Jacquie who happened to specialise in Autism. Jacquie’s response was enthusiastic and reassuring: after my earlier ten weeks of counselling sessions with her, she had picked up on many signs that I was possibly on the Spectrum, but as I had just been diagnosed with BPD by a Psychiatrist, she hadn’t wanted to tread on the toes of that diagnosis. I was booked in to see Jacquie for a formal assessment, and after my interview and the information gathered from my ten weekly sessions, I got the diagnosis that changed my life:

“… it is my opinion that Catherine meets the DSM-5 diagnostic criteria for Autism Spectrum Disorder without intellectual impairment or any history of speech and language delay.” – Taken from my diagnosis.

Also from my assessment:

Catherine’s scores are listed below:

A. Qualitative Abnormalities in Reciprocal Social Interaction, (19, cutoff 10)

B. Qualitative Abnormalities in Communication (14, cutoff 8), and

C. Restricted, Repetitive, and Stereotyped Patterns of Behaviour (10, cutoff 3)

 

**Achievement Unlocked: Learn Who You Are**

I felt like my safe had finally been opened and I had been introduced to the real me. I finally had the answers to all the questions I had been asking myself my entire life: Why am I different? Why can’t I fit in? Why do I struggle? Why do I hurt myself when I’m frustrated or upset? And about a million others.

I felt like my Depression dissipated overnight. It hasn’t – but I feel like a lot of my Depression can be attributed to the simple fact that I didn’t know who I was or why I felt so different. My anxiety was explained, my social issues were explained, my issues with responsibility and dealing with change was explained – so many answers! I spent the majority of my time talking about Autism with my family and learning about it on the Internet. The answers were coming in fast and even techniques and strategies on how to deal with my emotional outbursts were explained. The next time I was overwhelmed or upset my sister dealt with me exactly how she would deal with her Autistic son, she put a weighted blanket over me, closed my bedroom blinds and door and left me to calm down in the quiet and dark and suddenly, episodes that normally would have lasted hours turned into a much less stressful 15-20 minutes. I suddenly had coping strategies for life, and I was filled with optimism for what felt like the first time ever.

I am still learning new things about myself every day. Prior to my diagnosis, the many facets of my behaviour confused me and I was always depressed about the fact I seemed so intelligent but so bad at life. Now, I am excited that I can finally explain things. I wear my diagnosis like a badge of honour – I am different and I am proud of who I am. I can be weird and crazy and lack the life skills that people around me possess but IT’S OKAY! I am Autistic and there is no need to worry or stress about the way I am.

For parents of Autistic children who are unsure whether to be public about their childs’ ASD, I strongly STRONGLY encourage you to be open about it because it is who they are. They are special and unique and they will benefit so much from understanding why they are different. I encourage as much as possible to talk about Autism in an open and loving environment, don’t let your child feel like they have something to hide. The people around you will benefit too, they will understand if your child says or does something different or unusual, and hopefully instead of judge or criticize they will try to understand and acknowledge that your child cannot help but be the person they were born to be.

 

First Post – An introduction to Everyday Autism

First Post – An introduction to Everyday Autism

My sister has been trying to convince me for years to write a blog. She believes that I have insight and that I articulate myself well in writing. “Yeah…” I would mumble passively. “Seriously!” She would exclaim.  “You should!” Followed by “*reasons why I should blog that I don’t remember because I zoned out one sentence in*.”  It has taken me a long time to understand WHY she thought it would be a good idea. She gave me reasons, yes. But nothing ever clicked. Nothing ever made sense to me that was the catalyst that rocketed me into action, until today.

I got a call from her about her son, who is on the ASD spectrum. Sis told me that her son had been disobeying the teacher in class, and had gotten into trouble, which in turn made him very upset. Sis asked me if I thought son’s punishment for the days when he is disobedient at school should be “no technology”.

No technology? No iPad, no YouTube, no Playstation, no Xbox, no computer. For an ASD child who’s Special Interest is technology and gaming. This would tantamount to torture!

I explained to my Sis that “technology” should not be a blanket term. Technology is not limited to one thing. Technology is all around us – what kind of technology do you want to limit? For an autistic child, if you say “No technology” that has to mean everything – Television, iPad, phone, the works. But is no technology an option, given our lives are filled with technology?  It is how many of us communicate, research, learn, shop, relax, entertain ourselves. Is limiting access viable or even fair? Where is the line?

We are a technological society. For my sister and many of her generation, technology is unfortunately a bit of a scary term. She is always recounting studies and articles shared on her Facebook page of the so called negative impacts of technology on children, and she is constantly worrying about how much is too much. I tell her to stop worrying and reading extreme articles using dubious studies and scare tactics and realise it’s not TECHNOLOGY that is some bogeyman – it is what TYPE of technology your child is exposed to that can either be positive or negative.  Limiting her son’s use of all technology as a method of controlling behaviour is fine, if it works, why not?  But what if he needs access to the Internet to complete a school project?  What if he uses a specific math app on his iPad to help him complete his homework? And, most specifically in relation to children on the ASD spectrum – what if technology is his Special Interest and he uses it to calm down and refocus?

As soon as she asked whether she should limit her son’s use of technology, as an Autistic I said no.  For me, technology is what I live and breathe. It’s my relaxing reading on my Kindle on the couch. It’s browsing Reddit on my iPhone while I’m bored. It’s playing video games as entertainment. It’s searching recipes for ideas on what to cook, and ordering my groceries online. Without a working internet connection, I feel lost. I crave that connection to information. It’s my relaxation, my rejuvenation, as well as my downtime. Taking that away would be torturous for me. My nephew is like me, technology and gaming is his Special Interest, and like most people on the Autism spectrum, our Special Interest is our passion, our entertainment, our outlet. Taking that away as a whole feels unnecessarily extreme to me. It’s like telling someone they can’t go read in a quiet corner, or have a rest on the couch after a long day.  My sister, the neurotypical, did not understand the connection her son and I have to technology and how it helps us with our Autism.

So instead, I  suggested to her thinking about the TYPES of technology she could restrict his access to in order to encourage good behaviour. I know my nephew plays a lot of “twitch shooters”, the play style of which could aggravate his ASD, stress him out and cause sensory overload. “Twitch games” are games where you have to instantly react to things, it’s all about quick reflexes and instinct. Playing those games for someone on the spectrum is intense – your fight or flight response is constantly engaged, your adrenaline is pumping, at any time an enemy player can jump out at you and shoot you dead. You might not even see them – suddenly there’s bullets and in an instant – you’re dead.  I personally try to avoid long exposure to these kind of games because it is very hard on my system. I get anxious, angry, prone to outbursts of emotion and get very tired from the constant strain on my system. I explained to my sister that if my nephew is spending a lot of his down time playing these kind of games, he might get aggravated, angry, violent, frustrated, and stressed. Whilst he enjoys it, that kind of exposure in long stretches is not good for his Autism or him (or anyone around him!). I gave the example of a shooting game he plays, and compared it to a gentle building game with soft music like Minecraft. I told her that perhaps she should classify his games and the different apps and technology he uses into categories – Low Stress, Medium Stress, High Stress – and limit his exposure accordingly. I told her that based on my own experiences and behaviour, she may find that his meltdowns are reduced and his concentration and mood improves.  While playing a gentle, Low Stress game, an autistic individual like myself or my nephew will relax and unwind and it will help refocus us and prepare us for more required social or educational activity. I told her that perhaps use the High Stress games as a reward – ie when he behaves, he gets to play Call of Duty, but only for 20 minutes – half an hour. When he misbehaves – no Call of Duty. He has to play something else. This will give the double pronged effect of calming him down (as he has been misbehaving – he may already be overloaded and playing something calming will help him relax) and being a reward system.

My sister was grateful for the advice and my offer to help her organise her son’s games into Low Stress, Medium Stress and High Stress categories and once again brought up her idea of me writing a blog and for the first time, I agreed. It surprised me that my sister didn’t understand why technology was so important, and that she did not think like me. Not being able to think from another person’s perspective is a problem of mine, I just assume that everyone thinks like I do and understands things like I do. Today I realised that maybe I do have something valuable to contribute – an insight into the Autistic mind – and that I may be able to help parents, siblings, partners, carers, friends and even people on the spectrum themselves to better understand Everyday Autism.