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.

 

 

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3 thoughts on “Getting the right diagnosis – TIPS

  1. Thank you for sharing your list. It seems I’ve found a person who shares some of the same traits as I do. I have the sensory issues (do you like cutting your nails?) Your diagnoses are the same as mine. I have a very hard time staying focused on the present moment but always have had the need and skill to be highly organized (no offense). This is becoming a struggle as I age. I’m 36–37 next month. I laughed at your initialized version of the diagnosis 😀 Let me know how getting ins. coverage for services goes. Best, autisticaplanet

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  2. I see the sense in making symptom lists, but I find it almost impossible without input from others. I simply don’t see myself as an abhoration of normality! During my assessment a month ago, the psych watched for nuanced responses and actions more than relying on my limited list. It has only been the last month after reading many other blogs and books that I now have a list of my own. I just don’t have the words, nor a way to communicate what is in my brain.

    My son (14yo) is waiting for an assessment and he is struggling making a list. He knows he is different, but CANNOT communicate how. I think that fact alone says it!!

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