Coming out of the Autism closet

This post might come as a shock to some of you — it was certainly a shock to me! I’d be lying if I said I wasn’t a little nervous about writing this. Afraid of the judgement that might come out of it and afraid that it might impact my career and the people I know.

Recently, I discovered something surprising…

Wait, what? I’m f*&king autistic? This can’t be… I’m no Rainman.

Wow did that phrase make so much sense when I found out I was in the autistic spectrum. Non-verbal Learning Disability to be more precise. Was it easy to hear, absolutely not but at least I know why I am who I am.

This all started out when we had our son evaluated by a neuropsychologist. My wife, who’s a psychologist, always suspected he (she includes me in this as well) to be different and that he might actually be autistic. I always refused to believe it and felt he was normal just like me, shy and reserved. But the clues have actually always been there. In daycare when all the other kids were saying mom, dad and apple, our son was having full blown conversations with adults. He would align is toys in perfect order, could not support loud noises, would not tolerate certain types of clothes or fabrics, his fine motor skills were way lower than a kid his age and by 5 he was using words that most adults don’t even understand.

Olivier had been diagnosed with Dyspraxia when he was 3. Dyspraxia, a form of developmental coordination disorder (DCD) is a common disorder affecting fine and/or gross motor coordination in children and adults. The summer before going into 3rd grade, we decided to have a proper diagnosis in order to provide him with all the help and support he can get and to confirm my wife’s hypothesis.

The neuropsychologist had him go through numerous tests in order to evaluate him and make a proper assessment. Once the results were in, we met her to discuss the outcome.

Your son suffers from NVLD (Non-verbal learning disability). NVLD affects 1% of the population and is a disorder which is usually characterized by a significant discrepancy between higher verbal skills and weaker motor, visual-spatial and social skills. A really high IQ but lacks in other areas.

Whoa, my wife was right all along. I guess I never wanted to see it. The neuropsychologist ran us through all of the test results from IQ and EQ to strengths and weaknesses, were his difficulties will be in and out of school and even potential career choices. For 2 hours she ran us through the test results explaining each section in details, I sat there listening out of disbelief and realizing that my life actually started making sense to me. I was literally blown away. Suddenly I understood why I had always felt so different, like I did not always belong. Why I struggled when others did not and why I had made certain life choices.

Life has always been difficult for me. Not unhappy but not quite happy either.

I’ve spent my whole life feeling different, interacting with the world as if behind glass. Not broken exactly, but somehow other. Unable to do things that most people find straightforward. Plagued by guilt, fear and a sense of inadequacy.

As a child I never felt like I fit in. I struggled to feel accepted in a world that seemed designed for other people, not for me. Life was too noisy, too smelly, confusing, too much, and people seemed unable to understand and accept me. I had always had a lot of trouble that other people didn’t seem to have. Things felt like they were always hard for me and easy for everyone else. My motor skills were not the best. I could literally trip over a piece of grass that was just slightly higher. I had a lot of sensory difficulties: ticks, habits, clothing, noise, light and touch. I had a lot of motor planning issues that made basically everything hard. I would not play with my toy cars like any other child, I would line them up. I would spend hours creating these nice perfect lines and would lose it if someone moved it.

My parents never noticed anything wrong and thought I was just really really smart. I was perfectly bilingual at age 4 without anyone speaking english in our household. My mom just thought I picked it up from Sesame Street and from visiting relatives once a year in Niagara Falls. School as a kid was a real breeze. In high school and on into college things got tougher. Learning in the classroom turned into a nightmare as I struggled to understand the meaning of a lecture (information that is heard), while struggling with the motor problems of taking notes (slow, difficult, clumsy handwriting). People with non-verbal learning disorders also cannot distinguish between important and unimportant details. A student with NVLD is unable to highlight important information in a textbook and even summarize it, but will remember what the main character’s house colour was on page 5.

All I ever wanted was to be the cool kid. Why? Well, they get so much attention and everyone just hovers around them. Instead I was the kid everyone used for homework and to copy exams from. I did it because it was a way for me to feel like I belonged, like I was cool and they were my friends.

They would all act like they were my friends but also treated me like shit at the same time. Made rude jokes and used me as a punching bag. This might of been normal teen behavior for some but not for me. They knew I would not defend myself and just kept going.

Boy do I feel stupid today for putting through this shit!

As an adult I continued to struggle.

I couldn’t stay calm when things didn’t happen the way I expected them to.

The social world felt like a minefield. I yearned for people to understand me but, unaware of social rules and emotionally liable, I kept getting it wrong and alienating myself.

My sensory difficulties impacted on day to day life and I wanted to find answers.

It’s important to note that the following traits, weaknesses and strengths are from my personal experiences. Everyone on the spectrum is different and does not fall under a “one size fits all” category. I will spare the longe details as this post is already long but will try touching some of the main points.

Social Struggles, Sensory Overload + Stimming

Any kind of social event, big or small, is mentally, emotionally and physically draining for me, so much that I sometimes experience what’s called a social hangover afterwards. Things do get better over time, but I still struggle with it.

There’s a few reasons for this. One is that I’m happiest when I’m home, in my routine, by myself or with my wife and kids. I like living in my bubble. Another reason is that I never quite know what to say or do in social situations. I’ve learned how to “act” by observing others and watching movies and TV shows, but I still don’t know how to start or keep a conversation going.

I’ve often been told that people are afraid of me and that they don’t know how to really approach me. They feel that I am above everything. Me scary, really? I believe it’s actually my social clumsiness and my lack of demonstrating emotions that are behind this. I actually love helping people and don’t want to push anyone away.

Eye contact is also hard for me. It’s difficult to explain, but making eye contact seems almost invasive to me, so my eyes naturally avoid it especially when emotions are involved.

Sensory overload is another difficult aspect. My senses, especially touch and sound, are very sensitive, making busy, crowded places very overwhelming. Even family gatherings may cause anxiety for me.

When I’m anxious, overwhelmed or overloaded, I “stim”. Stim is short for self-stimulatory behavior, which is soothing for those with NVLD. My biggest stim is rubbing the crease of my shirt, but I also fidget a lot, sway a little from side to side and tap my fingers. I even had my “blanky” until I was 16… yes until I was a teenager. I see my son doing the same thing with his comfort blanket carrying it all over the house.

Hyper focus, Special Interests + Auto-didacticism

Not everything is negative around this. There are actually some pros.

Hyper focus

This is an awesome one. Hyper focusing allows me to get huge projects done in a very short amount of time. We execute way faster than the average person as having our very own production line.

Special interests

Mostly, hyper focus is only switched on when I’m working on a special interest. It’s common for people with NVLD to become obsessed with something and learn everything they can about it until they’re an expert.

Visual thinking

I think in pictures, not in words. Thoughts play like a projector in my mind, showing images or movies of whatever it is I’m thinking about.

Auto-didacticism

This is the ability to teach myself new skills. I can only teach myself things that are somehow connected to a special interest.

As an adult, the biggest challenge for me has to be verbal self-expression.

It’s always been very difficult — and almost physically painful — for me to talk about my feelings. It’s not because my feelings are painful, I just can’t ever find the right words. At work, I am often speechless in meetings or other situation because I just can’t get the words out of my mouth. Since I don’t communicate like the others, I believe it’s stopping me from moving ahead, getting promotions and stopping me from being heard. I often have solutions to problems but my inability to get the words out affect how others portray me which sometimes saddens me.

Often, my ideas are so strong that I can’t put them into words, and the thoughts that do form in my mind move so quickly that they bottleneck and get stuck as a lump in my throat. There are so many things I’ve never been able to physically say.

I know there are many out there who wish they’d been diagnosed with NVLD as children, but for me personally, I’m glad I was diagnosed later in life.

Why? Because I would of hidden behind it.

If I had been diagnosed as a child, my outlook on it would have been very different. There’s a good chance I would have hidden behind my diagnosis, using it as an excuse to not try new things and give up on life. I always aimed high and will keep aiming high regardless of this diagnosis and how people portray me.

Why am I coming out at 40? Well, I am mostly doing it for my son. I want to tell him that I love him for who he is, that we just see life differently, that our brains are wired differently from most people and that although he might struggle through certain phases in life, that everything is going to be ok.

I just want to take a moment to thank my wife for being so amazingly supportive. She’s my lighthouse and without her, I don’t know where I would be. Thank you for listening, supporting and encouraging me, and thank you for all you’re doing to understand me and our son better.

And lastly, a note to the readers…

As I said at the start of this post, I’m a little nervous to be sharing this. But keeping this a secret was never an option for me, because I know for sure that vulnerability, truth and transparency strengthens bonds and creates understanding and acceptance.

The biggest way you can help right now is by sharing this post.

There’s a chance that there’s someone in your social media reach who is living with Non Verbal Learning Disability and doesn’t know it.

Creating awareness by sharing this post on your Facebook, Twitter, Pinterest, etc, could mean a human being getting a diagnosis that could completely liberate his or her life, just like it’s done for me.

Thanks for reading this.

Sincerely,

Pascal