Climbing the autistic scale - how you can feel more autistic after receiving a diagnosis.
Updated: Jul 21, 2019
One of the things I read about most in groups for adults who received a late diagnosis, is that they feel more autistic after the diagnosis. They feel more autistic. That's weird, isn't it? And yet, I can absolutely relate to it.
I received my diagnosis only a couple of months ago, but like so many of my fellow autistics, the suspicion of autism has been there for years.
I had been in and out of several therapies for years. Suicide attempts, depressions, eating disorders, Chronic fatigue syndroom, IBS, you name it. I think I got my first real clue about what could be bothering me when I started studying psychology and came across the definition of autism, some 15 years ago. I was just in my twenties back then, when my professor told me - well, not specifically me, but my whole class - to read up on the most important diagnoses in the DSM.
For whomever does't know what a DSM is, it's like the psychology bible, classifying exactly which boxes need to be checked in order to receive a diagnosis.
'BUT!', The professor emphasised, 'you cannot think that anything you read refers to yourself. We all relate to certain things in some diagnoses, but that doesn't mean that you have any of them.'
When I read about autism, I felt like reading about myself. It felt like a longing for home. I know that doesn't make a lot of sense, but for some reason, I felt like I belonged to it. I even took an online test provided by university. These tests were meant to clarify what a test for, say, autism, depression, bi-polar disorder, etc, would look like. The test for autism consisted of 33 questions. Each question would count for one single point if answered 'right'. Suspicion of autism would have been valid from 20 points on and upwards. My score was 30.
But my professor clearly specified that we cannot refer to ourselves when reading the DSM or taking the tests, and so I didn't.
Sigh, taking things literally... perhaps this should have been my first clue.
Months later, I came into contact with someone who has autism too (it was referred to as Aspergers at that time) except he had a diagnosis and I didn't. I was struggling in school. Not with the material or the tests, but my level of energy, with keeping up with friends, with feigning social interest, with attending lectures. Whenever I was listening to lectures, no matter how interesting the subject, inside I felt like hanging upside down from the projection screen, bouncing of the seats or simply screaming.
I'm like quantum motion you see, you might not be able to see it, but I can never sit still.
Keeping myself on rails, suppressing all my tendencies, turning my stimms (which I didn't know were stimms at the time) into something cute and funny rather than embarrassing, it left me exhausted. I would listen to my peers making plans to have a beer in a local pub or go out at night and I would just genuinely wonder how in the world they managed to suffer it. I talked about these feelings to my friend with Aspergers and again found myself wondering of autism would apply to me.
One late and dark winter afternoon, when I was walking across a bus station to get to my bike, I crossed the road and in the darkness, I saw these two bright lights heading towards me. Like a damn deer, I stood there, amazed, hypnotised. I couldn't move, I couldn't breath, I felt tears burning behind my eyes because for some reason, those lights got me so emotional. They were beautiful, mesmerising and absolutely overwhelming. I almost came apart from all the emotions swirling inside of me.
My beautiful, outofworldly experience was abruptly interrupted by the horn on the bus and the screeching of its breaks as it thundered towards me. It dawned on me that those pretty lights were the headlights of a bus and jumped at the last second as the bus passed just inches from my torso.
Alright, so maybe this isn't normal...
I spoke with my GP. Not about autism persé as it was so stigmatised I didn't dare to mention it but about my mental health in general. She referred me to a clinic for evaluation to see what was going on.
I remember vaguely going to the clinic and getting tested, I remember quite vividly the conversation I had with the psychologist there. I thought I was dealing with a mental patient - someone manic perhaps - rather than a professional.
'Why are you here?' he asked me.
'I'm here because I'm having difficulties...' (duh!)
'Difficulties with what?' he asked.
'Well, with staying in one place, with being overwhelmed, with feeling tired.'
'Staying in one place?'
'Yeah, my mind drifts off easily, it's difficult to focus.'
'Oh, so, you fantasise a lot', he concluded.
'I guess', I answered although I wasn't really sure we were talking about the same thing here.
'Probably fantasies about being admired and being amazing, oh look at me!' he exclaimed as he rolled his eyes upwards quite dramatically. I was puzzled. What was this man doing? Is this what he fantasises about?
'No', I answered. 'I think about stupid things like, how many grains of sand do you need to call something a pile of sand... or...well... The meaning of life in general... And...' I started stammering.
'Hmmm, I see', he said. We were perhaps ten minutes into the conversation when he said: 'You have a borderline personality disorder.' I was amazed. Ten minutes in and he had already concluded I have BPD. If I didn't know any better, I might have accepted that diagnosis. I might have walked away thinking that was it. The problem was, I did know better.
'I'm quite familiar with the DSM', I intervened, 'And I'm pretty sure that's not it.' The psychologist got up, walked towards his desk and grabbed his copy of the DSM. He sat down across from me again and flipped the pages until he came to the section of Borderline Personality Disorder.
'Do you ever idolise someone and think they're worthless just moments after?'
'No', I replied hesitantly. Is he reading this out of the DSM? Shouldn't he know this by heart? To me, this all seemed very odd and I felt somewhat discombobulated. The psychologist continued:
'Are you happy one moment and can burst into tears or anger the next?'
'No', I answered.
'Have you ever had any out-of-body-experiences?'
'Are you impulsive?'
'Not unless I plan to.' (it was meant as a joke but the psych couldn't appreciate it, clearly.)
'Well then', he said as he closed the DSM again, 'I guess that's not it.'
I was sent home eventually. No diagnosis was made. I should just get over myself.
Years past. Years of being disappointed in myself. Years of trying to keep my head above water. Years of failing at normal jobs. Years of trying to compete with my peers who always seemed to do better. Years of being overwhelmed by motherhood. Years of being chronically ill.
My new GP (me and my husband had moved in the mean time) didn't know what to do with me. She sent me to every specialist there was. I took a lyme test, I was tested for MS, I was examined by cardiologists, neurologists, a specialist for internal diseases, and so on. Nothing was found. After almost passing out in the car - again - my GP decided to send me to a revalidation center. Here, I would receive physical therapy, psychological help, education of the body-mind relationship, and assistance to increase my physical fitness. I spent 8 hours per week at that center for over two months. I remember being hopeful. I was certain that with such intense help, I would be able to function normally for once. My psychologist there concluded very quickly that I must be suffering from panic attacks, as I was having physical complaints that were absolutely terrifying to me, such as passing out or falling asleep without warning, heart palpitations, sudden onset shortness of breath and so on. I couldn't trust my body anymore.
'Can you have panic attacks without feeling fear?' I asked him once.
'I don't think so', he said. 'When you're having a panic attack, you're panicing, that's the whole clue.' I was puzzled. Not once do I remember feeling fearful before any physical events. They always came out of the blue for me. It was after I was experiencing physical discomfort that I started feeling afraid. Really afraid.
Looking back, yes, I was having panic attacks and yes, if you have Alexithymia, like I do, you can have panic attacks without feeling afraid because it is difficult to identify what you're feeling. It's hard to identify or name any emotion such as fear, unless it hits you in the face. Hard!
I left my revalidation plan after two months. Again, no one was able to put a finger on my issues. It wasn't until my own son was giving the diagnosis Autism Spectrum Disorder that I was rerouted back to seeking a diagnosis for myself. Thankfully, my GP complied and referred me to a specialist center, thankfully my health insurance covered it all and thankfully I only had to wait for two and half months instead of six.
When I finally got diagnosed with both Autism and ADHD Inattentive, I felt this wave of... Jeez, I couldn't describe it to you if my life depended on it.
My bus had just stopped at planet 'Weird!' and I got off on the crossing of Stimm street and Distraction lane.
I decide to let things go bit by bit. I let myself stimm more and more awkwardly. Instead of having to turn my stimms into a dance or something less noticeable, I could now just flap and rock as I pleased. And as I did so, I noticed I started stimming more and more and more. I drove myself absolutely nuts with constant, in-concealable movement. I asked my psychologist at the autism center about this behaviour and she calmly explained that when behaviour is continuously suppressed and then finally expressed, it can be a little overwhelming and abundant at first. She told me it would calm down, and it did, but I definitely felt more autistic at that point.
I also felt more autistic because I finally understood my own difficulties. I no longer force myself to do small talk unless I feel like a million bucks and up to the challenge. If I feel the slightest bit uneasy for having to do my best to keep a conversation going, I let myself fall back to silence, and it's okay. I no longer have to label it as failure. It's just not my thing.
Same goes for crowdedness, sensory issues, reading in between the lines, and what not. It's okay, I can allow myself to be the autistic version of me, I can allow myself to feel more autistic now, as I am autistic.
My whole life, I've worked so hard to fit in. I was never labeled as autistic, so I had no excuse for falling behind or being less capable than others. It has brought me farther than could have ever been expected of me. And it has made me a lot sicker than I would have been if I had a better understanding of my own limits and challenges in life. Two sides of the medal, as the saying goes. Tremendous accomplishment requires tremendous sacrifice.
I don't know if I'll ever get my body to function properly again. I still cannot drive long distances, I still have loads of trouble sleeping, I still suffer from shortness of breath and palpitations, and I still need to take it day by day to see what my own body will allow me to do. And I have no idea where the road goes from here but I try to stay optimistic, I keep forcing myself to try and see the miraculous in everyday life. As a good friend recently wrote to me:
You just never know when some small, seemingly unremarkable incident bends toward the unimaginable.