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?

 

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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.