Guest Post by PapaGirlTribe: Why Access a Diagnosis as an Adult?

Very often I get asked by readers how my autistic husband accessed his diagnosis at  the age of 30, and why he pursued it. And despite my writing very often about my marriage to an autistic man, and educating others on the why and how of parenting autistic girls – this particular question has to be answered only by my husband. It is his voice, his journey. So tonight I’m passing the reigns over to my incredible, amazing husband Cj, to explain the why and how of his journey to accessing a diagnosis of autism as an adult. You can read his post below.

“So my story starts in the middle.  When my wife was coming to the idea that my eldest daughter was on the spectrum. I was against it.  To me she was perfectly normal.  She was everything I was and everything she did I saw as correct because it was me.  Even the little things like liking things ‘just so’ and being particular about certain sensations.  I could connect with that because I recognised it in myself.  To me that meant she was normal, so I couldn’t particularly understand what J was getting at with this whole idea.

But our marriage is based on compromise.  We’re so different there’s no room for poking your head in the sand and being stubborn.  So I took the same position I always do – I disagreed with the idea but agreed with the need to research until we had a definitive answer.  So we made a list.  A list of all the things that J thought were quirky – compared to her normal.  There were a lot of things on the list that I would consider normal, but, again, part of the compromise idea in our marriage is accepting that there are times when you’re going to be totally and completely wrong.  So I strapped in for the ride thinking it was going to be a big goose-chase but still determined to see it through, if only for the sake of my wife having clarity of thought and knowing it was normal.  Fast forward, things happen, culminates in an appointment with a paed.

Now, I managed to have a car accident that morning and the paed appointment was almost immediately after I was discharged from hospital so I am not entirely certain of what went on during that appointment.  But, suffice it to say, S ended up with a diagnosis of then Aspergers, now ASD.  I would be lying if i didn’t say I was confused as fuck.  The kid was totally normal to me.  Considering the process it had taken to get us to that point, rather than doubting the diagnosis, it made more sense to doubt my own opinion.  So I did what I do best.  I asked questions and looked at the details.

I’m firmly of the view that a lot of our truths in life are based on our frame of reference.  Sometimes the easiest way to answer our own questions is to look first at the frame of reference we are using to ask the questions within.  So when S was diagnosed it made me ask that exact question – “Am I honestly looking at the world through neurotypical eyes like I thought I was?  And, for argument’s sake, if I wasn’t would my world make MORE sense if I looked at it from the perspective of a person with ASD?”.  Now this wasn’t a quick process for me.  I had to wind back all the way to when I was a young child and re-view all my memories and struggles with a new filter.  The strange thing was, that with this new filter, I stopped being quirky and odd and I started making sense.  All the things that had upset me as a child and been struggles as a teenager and a young man that I had never been able to reconcile with my normal suddenly had a reckoning.  It. All. Made. Sense.

Not to say I accepted that.  It was another good period of time before I could actually accept that it made sense.  But I got there.  The next logical question for me was what could I do next.  And for me the answer was to talk to someone who knew about it to confirm what I thought.  Now, I do need to digress at this time and make something very, very clear.  I would never DREAM of telling anyone I had ASD unless I had taken the time to access a professional diagnosis.  It is absolutley, totally, cheapening of a diagnosis to self-diagnose and then broadcast your self diagnosis.  So, to do proper justice I needed to access that diagnosis for myself so I could see if what I thought was true.  Several clinical psych sessions later and a whole lot of background forms for both myself and my parents and what I thought was true was confirmed as reality.

I look back on that moment as something of a rebirth moment for me.  It was my ‘aha!’ moment.  It let me look at myself and the things I struggled with and know that my struggles had meaning.  That they were actually neurological challenges that I could overcome with guidance – and why using the logic and reasoning of a neurotypical person was never working to solve them in the past.  Doors that were closed to me I can now open and paths that I had written off as being impossible for me are now possible.  Because now I know how to approach my challenges.

Diagnosis is so important for that reason.  ASD is a disability.  It’s not a fad diagnosis and it’s most certianly not something you can turn on and off.  It’s not little struggles and we’re not all a ‘little bit autistic’.  Autism makes your head work differently.  I can do things that neurotypical people can’t and I struggle do things that neurotypical people can do easily.  It was be foolish for me to say I can now get on with life.  I can in my way, but that would be akin to an amputee saying they’re fine and can function perfectly in the world around them – they certainly can, but they have to adapt themselves to the world rather than waiting for the world to adapt to them.  Diagnosis has given me my prosthetic limbs.  If I wear them right, people around me will never work out that something is wrong unless they look closely.

I have had 30 years to teach myself how to cope in society.  I have a type of autism that makes me a brilliant mimic.  I don’t meltdown traditionally in a screaming, raging mess but rather I retreat inside myself.  I know now what that is and why it happens.  I can work to avoid those situations.  I can manage what I can’t avoid and now, with the help I’ve been able to access since my diagnosis I know what I’m doing rather than fumbling through.  Diagnosis has given me access to the future I thought I couldn’t have.

So when I’m confronted by people saying they don’t want to get their children diagnosed because they don’t want the label it makes me sad.  It’s not the children who are afraid of the label.  The children (or adults for that matter if we’re talking adult diagnosis) will only benefit.  It’s not the person with ASD who will grieve for the diagnosis but those around them.  Early diagnosis is so important to build a toolbox for coping with everyday life.  I’m both lucky and unlucky in the way my condition presents.  I was able to hide it with my ability to mimic for 30 years – and I still am a very good mimic – but being able to hide it also meant I went that long without a diagnosis.


So that’s the why and how.  That’s the middle of the story.  There’s always more.  But that’s where it started to make sense.”

2 Comments

  1. Beautifully written – I hope to hear from PapaGirlTribe more often
    x

  2. I admire your strength, courage and your amazing family. Your example should be the yardstick parents should use to ascertain what may benefit their child best not how they feel about it or will be perceived as parents who have produced a child with ASD. You guys are proud of your amazing children and have every right to be. Really enjoyed reading your perspective CJ. Thanks for sharing.

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