The invisible girls on the Autism Spectrum

The invisible girls on the Autism Spectrum

I recently helped a friend with her niece, who had just been diagnosed with Borderline Personality Disorder. My friend strongly felt that this diagnosis was wrong, and after reading more about my symptoms and experiences with ASD believed that her niece “Anne” (name changed) was actually Autistic. The symptoms were all there – social issues, anxiety, depression, sensory issues, self-harm… the list goes on. After hearing about Anne’s personal experiences, including being bullied at school due to a simple social misunderstanding, I urged my friend to get Anne reassessed for a proper diagnosis. I felt instantly connected to Anne – we both experienced bullying at school due to not fully understanding social rules and etiquette and our inability to “read between the lines”, we both experienced depression, anxiety, self-harmed and were even both diagnosed with BPD… It was as if I was watching teenage me struggling all over again. I felt the pain, the frustration at being misunderstood and the confusion of misunderstanding the world around me.

I followed up with my friend about Anne’s progress about a week later. She had just met with her school counsellor and shared her belief that she may be autistic. This was what the counsellor said:

“You can’t be autistic. You have friendships!”

After hearing this, I was furious. 30 years of self-doubt and frustration washed over me as I remembered the misdiagnosis, the misinformation, and the misunderstandings. My whole life I had exhibited the classic signs of my unique form of Autism, but due to a lack of knowledge and research I had been missed. And it was still happening.

We are different, so why doesn’t anyone know about us?

After I calmed down, I realised that it is not this counsellor’s fault. They are the product of the lack of research and knowledge about girls with Autism. Why is this so? Why do we have a voice but nobody seems to listen? As Dr Lori Ernsperger, PhD, BCDA-D explains:

“Obtaining an ASD diagnosis for a female can be very challenging with scant research and available answers from professionals. Autism was first reported by Leo Kanner in 1943 and since that time there has been thousands of journal articles and wide-spread international attention. Yet, there is a paucity of scholarly research focused on females with ASD” (Ernsberger n.d.).

How are we different?

Many people I have encountered have expressed disbelief that I am Autistic. Their experiences with Autism showed a complete disparity to their observation of my behaviour. To my friends and acquaintances, I seemed perfectly normal. I made friends, was sociable, intelligent and had a sense of humour. In their eyes I had never exhibited any of the commonly known Autistic behaviours – I made eye contact, I acted “normally”, I was well-spoken and thoughtful, I didn’t “meltdown” or hit myself or others. To them, I was just like everybody else. However, appearances can be deceiving.

According to Dr Ernsberger, girls on the spectrum often exhibit –

  1. Skills in social imitation – we observe the behaviour of those around us and replicate that behaviour, as to not appear different or attract attention.
  2. A desire for social interaction – while large groups can be overwhelming, many girls on the spectrum enjoy one on one or small group interactions, which is in direct conflict with the perception that those with ASD are “shut off” from the world and do not socialise.
  3. Passive and shy behaviours – being shy is not uncommon, this symptom is often overlooked and passed off as normal.
  4. Better imagination – girls on the spectrum can often use their imagination to create and express ideas, not just imitate or copy.
  5. Better linguistic capabilities, especially during developing years – many girls on the spectrum have a well formed vocabulary from a young age, whereas people may perceive people with ASD to be non-verbal or have a limited vocabulary.
  6. Interest that focus on animals or people – most children have an interest in a particular animal or their favourite celebrity or hero, so it is often overlooked when girls with ASD show this tendency.

The problem with recognition and getting a proper diagnosis

ASD girls know we’re different. We constantly observe others and see the differences, we feel them. Inside, we know something is wrong. Translating that feeling into words and getting a professional to understand us is often difficult, and it’s frustrating when they try to tell us we are “normal” or when they entertain ideas of personality disorders. We know we’re not “normal”, and we know we’re not curable – we know we have been this way our entire lives.

“…no matter how high my score was on the assessment I took a couple of years ago at the age of 50, my psychologist insisted that those characteristics were caused by childhood trauma, not Asperger’s” (Unknown author n.d., quoted in Ernsberger 2016.).

Some physicians will downright refuse to consider ASD, even when all the facts are right there. Don’t try and tell us our issues are caused by traumas, our traumas are caused by Autism! Similarly, they can often be too quick to jump to personality disorders, perhaps because they are more familiar.

“When women walk through the door with the subtle characteristics of ASD, the doctor will shift to other disorders (Happe 2013, quoted in Ernsberger 2016). These disorders include personality disorders, mood disorders, depression, anxiety, OCD, or even eating disorders.”

With all of these hurdles in place, it is no surprise that girls and women on the spectrum are undiagnosed. It is estimated that amongst intellectually able individuals with ASD, the ratio of girls to boys is 1:10 (Dworzynski et al 2012, quoted in Egerton and Carpenter 2016). This means that for every ten intellectually able boys diagnosed; only one girl is diagnosed. How can this be right? Is Autism in girls simply less prevalent due to biological or genetic factors, or is it a case of misrepresentation? I believe the latter. If I went undiagnosed for over 30 years, and if girls like Anne are being told they can’t be Autistic because they have friends, how many other girls and women out there are flying under the radar?

What we can do

To battle these statistics and overcome the lack of knowledge about girls with ASD, we need to talk about it. Create conversations with other parents, your doctor, your family, your psychologist, and your friends. Blog about it, post Facebook statuses about it, share articles and information. The “Girls and Autism: Flying under the Radar” booklet listed in the references is a fantastic tool to handout to professionals and teachers involved in your children’s life to increase their awareness of our differences. The more awareness we create, the more we can overcome the adversity that girls on the spectrum face every day. The more awareness created, the more public interest, funding, fundraising and research is generated. This creates a trickle-down effect to health care professionals and those that are taking care of our children.

I don’t want to see girls like Anne go through what I went through, the isolation, the ostracism, the anxiety and the frustration. The world is hard enough without having to go it alone.

 

 

References:

Egerton, Jo and Barry Carpenter. 2016. “Girls and Autism: Flying Under the Radar.” http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html.

Ernsberger, Dr Lori. 2016.  “Girls and Women on the Autism Spectrum.” Accessed June 1st, http://www.amaze.org.au/girls-and-women-on-the-autism-spectrum/.

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My thoughts on telling children about their diagnosis

I recently wrote another guest blog for Sprout Therapy Services, about the importance of telling your child about their diagnosis. This is a topic I feel very strongly about, as I went over 30 years without knowing I was Autistic. This wasn’t the fault of my parents, they had no idea. In fact, my mum passed away a year before I was diagnosed so she never even found out. There is simply a lack of research and education about girls and women on the spectrum, and how we often present differently to boys – more on this to come in an upcoming post!

Here’s the Sprout blog:

Telling your child about their diagnosis?

 

Getting the right diagnosis – TIPS

Getting the right diagnosis – TIPS

So I finally found a really awesome psychiatrist! It was hit and miss, I had to try a few before I found one who really knew his stuff when it came to Autism – and women with Autism. We clicked immediately, he made me feel comfortable and I had high hopes for a concise and detailed diagnosis. So, where to begin?

Fortunately, this time I came prepared. I had spent far too much time and money trying to fully explain to doctors exactly how I felt, and the things that I experienced. Too often I entered an appointment and immediately forgot everything I wanted to say. When I was asked questions I would totally draw a blank, or give a half bumbling explanation that didn’t nearly cover everything I wanted to say. At times I would get emotional or focus on a particularly troubling point in my life which led to diagnoses that centred around that one thing. Sometimes the psychiatrist would ask leading questions that took me in the total opposite direction and led to strange and unrelated diagnoses (as if I went into the appointment as an apple, and they told me I was a banana), and being shy and submissive I just sat there and let it happen without speaking up. This time I was determined to get everything off my chest, so I made The List.

THE LIST (aka Being Prepared)

The List was four pages long, my laundry list of symptoms, concerns, mannerisms and issues that I experienced on a daily basis. It took me two days and multiple conversations with family members and friends who knew me best. Prior to my initial psychologist’s ASD diagnosis I had assumed many of my behaviours were normal (doesn’t everyone hit their head when frustrated or burst into tears when something doesn’t go as expected?) so it took me some time to search through these behaviours and identify what was typical and what was different.

When compiling The List, I organised my points under headings such as Social & Interaction, Sensory, Relationships, Visual & Mind, Routine & Change, Verbal and Communication, Anxiety, Sleep, Memory and Day to Day. Because I am not good with categorising, I got my sisters to help me place each symptom in it’s related category. Here is an example of some of the symptoms on The List:

Social & Interaction

  • Can’t answer the phone – I need to recognise the number and be prepared to talk to that person. Even when I recognise the number often I can’t face talking to that person because I need time and energy to prepare for social interaction
  • Don’t understand or enjoy small talk – don’t see point of it, also don’t know how to generate small talk or respond
  • Find it difficult to maintain conversation – when there is a lull in conversation, I panic and don’t know what to do or say so I often say strange things
  • Don’t like going out, social interaction. Get overwhelmed quickly
  • Misunderstand social cues & social etiquette (ie: someone who often helps me will hint that they need help, I will miss this and the person will get upset and feel I have ignored them). I can be abrupt with people and am considered rude, especially when overwhelmed.
  • I hide a lot of my personal traits and try to act “normal”, this is exhausting

Sensory

  • Touch – lightest touch (eg slight rubbing on skin) is painful
  • Can’t handle tags, zips, buttons or seams in clothing – have to remove them before wearing
  • Only wear certain fabrics like viscose/elastin
  • Lights, sounds, movement, I am constantly on high alert (fight or flight mode)
  • Smells – a lot of smells make me sick – can’t be in same room when someone sprays perfume or deodorant
  • Can’t touch certain fabrics

Visual & Mind

  • Can’t “connect the dots” – struggle to understand how Point A gets to Point B without having the process explained
  • Don’t understand generalisations, can’t think of examples
  • Can’t categorize (I got help with this list)
  • Need things written down/visual eg questions, instructions, etc to enable me to follow so I can refer back as soon as I forget
  • Find patterns soothing, hypnotic – I will stare at patterns, my eyes unfocus and I lose track of time. Patterns often calm me

Routine & Change

  • I have a daily routine that I keep and I get anxious/overwhelmed if this routine is interrupted or changed, even by something as simple as the doorbell ringing
  • HATE sudden changes, I get anxiety/overwhelmed, have meltdowns – from childhood (eg: stopping off at the supermarket on way home from school when I expected to go straight home – this was incredibly anxiety inducing and made me frustrated and angry)
  • Hate unexpected visitor drop ins or late notice drop ins

Verbal & Communication

  • When I am overwhelmed (social interaction, processing information, etc) I will shutdown and become non-verbal. People talk to me and ask questions and I just can’t respond. I feel pain and confusion when they interrupt this shutdown time, like I am physically and mentally being torn away from my thoughts
  • Can’t verbalise or explain things – especially things about me
  • Can’t go “off-topic” eg: I am doing something or talking about something and somebody interrupts/distracts me by bringing up another topic, I cannot return to my train of thought or activity without severe confusion, it causes cloudiness and confusion to change topics
  • Lose train of thought midway through conversations, sentences, if I am distracted (by light, patterns, noises) or interrupted

Anxiety

  • Have to find a chair with my back to the wall, in corners, etc
  • Always have fight/flight mode engaged in public (exhausting)
  • When I have to somewhere new or unknown

Sleep

  • Have trouble falling asleep every night since I was a baby, can’t slow down my mind or stop thinking
  • Get fidgety, agitated, can’t relax
  • Sometimes in bed I get super energetic until I express that energy (eg: pushing and poking, laughing hysterically, jumping around, throwing my arms around until I am calm and fall asleep)

That isn’t the complete list, just a few examples under some headings to get an idea of the kind of behaviours I considered out of the ordinary. If you are particularly knowledgeable about ASD you may read this list and think wow, she’s super dooper Autistic, how did it take 31 years to get diagnosed? The answer is simple – ACTING. Some of my friends from over the years have contacted me since I went public with my diagnosis and they have said they don’t believe I am autistic, there is “no way” because I seem so normal. The thing is, they have no idea how hard I have worked over the years to appear that way.

“BUT YOU SEEM NORMAL TO ME?”

From a young age I observed people. I watched them interact with each other, with me, what they said and the mannerisms they exhibited. I learned what made people laugh, what offended people, what made them happy. I learned to mimic these behaviours because deep down, I had no idea how to behave. Nothing came naturally to me, I had to force every interaction, every conversation, even just walking down the street was an act. I had to walk like everyone else, act like everyone else, smile and nod like everyone else.

So of course, I was a social chameleon, mimicking the behaviours of my friends and always came across as just another normal girl. Extracting who I really was and separating that from the controlled behaviours that I had learned over the years was a part of the process in creating this List, and frankly would not have been as easy without my psychologist’s previous ASD diagnosis. I have learned so much about myself in the year since her diagnosis.

THE PSYCHIATRIST’S OFFICE

So, here I was sitting in the Doctor’s office and sweating profusely. I had never been here before so I was nervous and didn’t know what to expect. I shifted uncomfortably in my seat and tapped my foot. When the Doc asked me what brought me to him that day, I handed him The List, and told him that I struggled to remember and verbalise everything that I experienced, so I had prepared a list to help me help him in identifying what was wrong with me. I told him that in the past I had been been diagnosed with many disorders and illnesses, so this time I wanted to make sure everything was covered off and that he had a complete picture of everything I experienced. I also made it clear that while my previous diagnosis of Autism seemed to fit me best, I was not attached to any particular diagnosis or label, I just wanted someone to understand what I went through and hopefully help me in the best way possible.

I also told him I brought school reports ranging from primary school to high school, which I felt gave valuable insight into how I struggled as my school years progressed and social interactions became more complex.

Then I waited as he read The List. He underlined things, made notes, nodded, smiled, asked some questions, then after he finished all four pages he moved on to my school reports. He commented on how they all had a similar theme – “Catherine is distracted easily. She is intelligent and capable of so much more but she has trouble staying engaged”.

As my list was so detailed and my school reports gave a history, he said he felt like he knew me already, and was able to ask direct and relevant questions.As I had just spent days preparing all of this information, it was fresh in my mind and the answers to his questions came easily. For once I was quite concise and insightful, and once our hour was nearly complete he had quite the picture of my life that normally would have taken many sessions to establish.

Then came the diagnosis that I have been waiting for:

“Autism Spectrum Disorder with comorbid Attention Deficit Disorder, Obsessive Compulsive Disorder, Generalised Anxiety Disorder, Sensory Processing Disorder and situational Depressive Disorder”

Or, as I like to call it ASDADDOCDGADSPDSDD (not really). Every single one of those things completely and totally fits with me, and are the missing puzzle pieces. Finally I went into a doctor’s office as an apple and he looked at me said, you are an apple.

So there we have it, I got my Expensive Piece of Paper (if you’ve read my previous posts you may know what this means). I can now move forward and get the assistance I need to help me live independently and hopefully be much happier, now that I know exactly why I am the way I am.

 

 

I did a thing! Guest blog for Sprout Therapy Services

I am very happy to share my first guest blog post for Sprout Therapy Services! You can find it here:

Thoughts from a grown up with Autism

Sprout does some fantastic early intervention therapies for children with special needs, including my own niece and nephew! They are so lucky to be growing up in a society that is ever changing and becoming more accepting and encouraging of people with special needs. If you know of any family or friends with special needs kids, please share with them so they can check out some unique and beneficial programs that can help their children grow and develop.

Special thanks to Krista and Monica at Sprout for getting me involved with their blog x

Women on the Spectrum – How many fly under the radar?

Women on the Spectrum – How many fly under the radar?

Something happened to me today that completely and utterly deflated me, undoing all the progress I had made yesterday in setting my life in a new, positive direction.

Firstly I would like to thank anonymouslyautistic for posting about this, which pretty much sums up the many issues women and girls with ASD face – being underdiagnosed or even misdiagnosed as so many of our symptoms overlap with other things. This is the problem I faced today.

I was apprehensive about going to a psychiatrist. I have always left appointments more confused and miserable then when I went in. I had hoped today’s visit would be more positive – I have a clear understanding of what I have, I know how it affects me. I can describe in detail all the little things that I used to think were normal – banging my head when frustrated, the issues I experience from sensory overload – instead of leaving them out and considering them just normal and not interesting enough to discuss. Armed with all this new information I have learned about myself since my diagnosis from my long term psychologist who specialises in ASD, I thought “maybe this time will be different”.

Why bother going? Without going into too much detail about my personal circumstances, I need a diagnosis from a doctor or a psychiatrist in order to put in place some things that will help me integrate into a supportive workplace and be more financially independent. I have found that my diagnosis, although recognised and acceptable to most organisations and people I deal with, is now not good enough for the government. This is most upsetting but unfortunately, the way it is. So even though I have never had a correct diagnosis from a psychiatrist, back I go and spend $400 that I don’t have to get a piece of paper that tells me what I already know.

TL;DR: I have a piece of a paper. It’s not good enough for government. Need a more expensive piece of paper.

The psychiatrist was fine, don’t get me wrong. I am not down on psychiatrists at all, they do fantastic work with a lot of people and I am not undermining that. It just so happens that the ones I have seen in the past saw something in me that made sense to them, and they ran with it. My point being, it is such an easy thing to do with girls on the spectrum. We camouflage ourselves well, it is a skill we have developed to fit in and not appear different, and so many of our symptoms align with many other conditions it is no surprise that it is missed. But today was a let down, I had what I consider to be an open and shut case of Autism. So why was it ignored, again?

Firstly, the psychiatrist kept interrupting me. For anyone on the spectrum you will know that this completely derails you. I kept forgetting my points, forgetting to include parts of my behaviour that really cemented my ASD diagnosis, trailing off and losing my focus. Because of this I felt like I wasn’t able to properly articulate myself, and I found myself being guided down avenues that weren’t particularly relevant, for example, I would be trying to explain my sensory issues and how they affect my daily life. What I wanted to say that places with a lot of people and noises and lights and unexpected movements frighten me, and explain the methods I have of dealing with these fears (eg: putting on sunglasses to avoid bright lights, wearing noise-cancelling headphones in noisy places, etc). But what actually happened is this:

“…so when I go outside I get bad anxiety from all the movement and all the people, like for instance when I avoid going to busy shopping centres because…”

“Have you always avoided going to places you know people will be?”

“…Well, yes, but…”

“And when you were growing up, you mentioned you were bullied by other children at school. Did this make you avoid school?”

“Yes…” And suddenly we are talking about past traumas and things and I am thinking, here we go, another diagnosis of Borderline Personality Disorder or some such thing and before you know it, he is talking about Avoidant Personality Disorder. I had never heard of this before, so I didn’t have the knowledge to know whether it fit me or not. Since arriving home I have done some research and no, it does not fit whatsoever.

“People with avoidant personality disorder experience long-standing feelings of inadequacy and are extremely sensitive to what others think about them. These feelings of inadequacy leads to the person to be socially inhibited and feel socially inept. Because of these feelings of inadequacy and inhibition, the person with avoidant personality disorder will seek to avoid work, school and any activities that involve socializing or interacting with others” (Bressert, 2015)

Ok, I guess this kinda fits? But there’s more:

“…They desire affection and acceptance and may fantasize about idealized relationships with others.”

NOPE. I can’t stand affection. Don’t really need acceptance, either. I’m just fine living life by myself and playing video games. And fantasizing about idealized relationships? I guess? But only when I’ve been really unhappy with my life, and who doesn’t fantasize about having things differently when they are in a pit of despair?

The more I read, the more I realised that this didn’t fit at all. The psychiatrist did not diagnose me with it, but he tossed around the idea and now I am reading more about it, I understand where he was trying to go with his line of questioning. As it has happened before, it seems that something I have said has triggered an idea centering on a particular condition, which directs the line of questioning, which may produce more evidence (or not) to back up this idea, and then suddenly it’s entrenched in the professional’s mind that this is what you have and they don’t really look at anything else.

What happened today reminded me of the Girls with Autism: Flying under the Radar post, and I had to go back and read it in more detail and reading through the mini-guide was a revelation. Sure enough, it echoed the issues I have faced my entire life. And that got me thinking further, how many girls and women are still struggling through their lives, not knowing why they are different and getting many different but incorrect answers from health professionals? Girls on the spectrum don’t usually want to make waves, so how many of them just meekly accept these diagnoses and continue on without the tools or knowledge to help them live a more fulfilling and easy life?

So, rather than change the name of my blog to “Everyday Borderline Personality Disorder and Avoidant Personality Disorder with co-morbid Major Depressive Disorder and Anxiety Disorder Blog”, I might just stick with “Everyday Autism Blog” and continue in my search for that piece of paper. Wish me luck.

 

References:

Bressert, Steve. 2015. “Avoidant Personality Disorder Symptoms.” Psych Central. http://psychcentral.com/disorders/avoidant-personality-disorder-symptoms/.

Egerton, Jo and Barry Carpenter. 2016. “Girls and Autism: Flying Under the Radar.” Accessed June 1st, http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html.

 

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.