A Blog Article Written by a Client of the Practice “Late Diagnosis: Why Bother?”

Late Diagnosis: Why Bother?

“Then Cheery Littlebottom had arrived in Ankh-Morpork and had seen that there were men out there who did not wear chain mail or leather underwear, but did wear interesting colours and exciting makeup, and these men were called “women.”

And in the little bullet head the thought had arisen: “Why not me?”

“The Fifth Elephant” by Sir Terry Pratchett (GNU)

This one is hard to write, but I think it is important.  I have increasingly been seeing the rhetoric of neurodivergent conditions, Autism and ADHD in particular, being ‘fake’ or ‘excuses for not trying’ or ‘the latest TikTok fad’, and I think it is dangerous, and disingenuous.

As to why people who have managed to get by well enough in life into adulthood might seek such diagnoses, I think the answer might lie in increased public awareness of these conditions right enough, but I don’t think it’s something to jeer at or dismiss as a ‘fad’.  I will never be able to see into other people’s heads and I can’t speak for everybody’s experience, but I can share mine.  Even if I’m only shouting into the void.

I am a woman in her mid-30s who has Autism and ADHD and finding that out was the best thing that ever happened to me.  That seems a strange thing to say: they’re not uncontroversial conditions, they come with stigma, they change how people see you, and to understand my claim I think you have to understand a bit about who I was pre-diagnosis.

From about as far back as I can remember, right up until 2 years ago, I wasn’t a woman with autism and ADHD, I was just weird.  I was someone who would constantly be asked why I was always so negative, why I could never be happy, why I always had to ruin everything, why I always had to make everything about me (actually, as I’m sitting here writing about myself, I’m not sure they were completely wrong on the last one).  I was someone whose inner experiences would always be dismissed as being wrong, who would be told I actually did understand (which was always news to me), or that I was being sensitive, or over the top, or difficult, or arrogant, or any number of labels which so often seemed to be negative.  I learned early that I was ‘wrong’.  That I wasn’t worth much.

My earliest realisation that I was a bit out of step with the world goes all the way back to Primary 1.  There was a break time where I was off on my own in the playground, walking along a broken section of wooden fencing because I liked the bouncing sensation and singing to myself (I am embarrassed to admit that it took me a lot more years than it should to realise that singing and talking out loud to myself were not socially acceptable – I still do it when I’m alone in the house or with the dog).  I remember feeling the fencing shudder and seeing a load of my classmates standing at the other end of the fencing, stamping on it and laughing at me.  It’s probably the first time I recall feeling self-conscious about just being myself.  I also remember, somewhere near the same time period, my class teacher standing me in front of the class and asking anyone who had been saying mean things about me to put their hands up.  I vividly remember even a girl whose house I had visited, who I thought was my friend, put her hand up.  No one didn’t.  I go back this far because it has set the tone for most of my life.  I have always been ‘weird’.

Being relatively intelligent and good at pattern recognition is probably what saved me from being caught out by my tendency to retreat into my own head and miss chunks of instruction from teachers – you could usually work out what you were supposed to be doing from context.

I would frequently be told by teachers throughout primary and secondary school that I was oversensitive – and this was to my detriment as it quickly became apparent to me that any bullying would be written off as my ‘over sensitivity’.  To this day I find it very difficult to identify the line between cruelty and banter when it relates to myself, and it generally leads to me being scared to make waves or trying so desperately to fix things, that I break things that weren’t broken in the first place (hello rejection sensitivity!).

I was frequently told off for not making eye contact and, when I started to make a point of doing so, not only would I miss a lot of what was said to me (too busy thinking about keeping eye contact!) I would be told I was making people uncomfortable by staring.  You honestly can’t win.  I think I was in my late teens before I heard about a trick of looking at the bridge of someone’s nose and looking away on occasion.  I still don’t like eye contact.  It’s hard to think when I’m looking into somebody’s eyes.  Yet people will insist on it when they are trying to talk to me in a serious manner: I think they interpret my lack of eye contact as a sign of disrespect or not listening.

It was 2022 when I first realised that I might want to consider an autism diagnosis.  I was asked if I wanted to go on a course about how to better support neurodivergent people through work and, being new to the role I was super keen and jumped at it.  That decision changed my life.

I remember when they were discussing common traits of autism on day one and the impact it can have on people’s lives and I remember feeling like something huge was happening internally.  I wish I could use my talent with words to explain to you what I was feeling but…alexithymia.  Sometimes what I was feeling on a given occasion comes to me later, sometimes it doesn’t come at all.  The best I have ever managed to describe my epiphany at that time is that it was huge and it felt like…“oh”.

I held onto it for a little while because I was honestly scared to raise it in case it was just dismissed out of hand.  The first person I spoke to about it was a colleague, and I told him I was thinking about whether I might be autistic.  His response was: “yes, but you knew that surely?”.

I mentioned it to my brother, who by that time was well on the way to an ADHD diagnosis, and his response was: “yes and did you know you have ADHD too?  You really should look into both”.

I mentioned it to my married friends, and one turned to the other and said “ha, told you so!”  They have 3 autistic children you see and have told me since that they started to put a lot of my more confusing behaviours together once their children started being diagnosed.

So, I started the process in the summer of 2023 and, after speaking at my GP (and yes, I do mean at) for half an hour off my pages of notes, I was referred on for both assessments without question, and told it would be around 2 and a half years before I heard anything further.  Anyone doing the maths there will notice that it hasn’t been near that yet.  The thing about having a condition where one of the classic signs is a complete lack of patience, is that having answers dangled in front of you juuuust out of reach?  It’s painful, it’s stressful, and I was finding it harder and harder to keep acting normal (well, as normal as I had been managing to that point, which it turns out wasn’t very).

I spent my savings on a private diagnosis (autism first).  I can tell you, categorically, that very few people, if any, would put themselves through that for the sake of a ‘fad’.  I had to fill out a survey detailing many of my lifelong struggles.  I’m not sure I was meant to add a page and a half of typed notes to clarify questions where I wasn’t sure of the meaning or felt I needed to expand, but I’m sure it was helpful.  To give you an example of one of my notes, I added:

“18: I believe I am much better at this than I was, however, my friend recently informed me I am still not always very good at this”

This was to a question about understanding when someone needs comforted.  It was my shortest addendum.

I then had a survey for my parents and one that was for someone who could answer for me now.  So, I gave one to my best friends, one to my brother, one to my line manager, and one to my colleague.  I wanted to make sure it was accurate you see, and I figured that would be a good spread.  I’m given to understand my approach to these surveys might have been something of a tell.

Then I had to sit and discuss all the ways in which I have issues, because diagnosis requires deficit, you don’t get it just for being a Sherlock Holmes style pattern recogniser (actually, he had his issues coping with life when he wasn’t sufficiently engaged in solving a puzzle, so maybe you would).  I then had to accept that my mother was going to sit and discuss all the issues that I have or have had with a medical professional, including how they negatively impacted on the people I love. Or, as my mother put it, she dobbed me right in.

The psychologist who diagnosed me recommended I also consider an ADHD diagnosis.  It went along similar lines, and I sent out a similar number of surveys.

I think the only person surprised when both assessments resulted in a conversation along the lines of “this isn’t a particularly difficult diagnosis” was me.  I both knew and didn’t know.  Another day I would like to go into more detail about the imposter syndrome that I’ve since noticed is very common in adult women pre-diagnosis, but let’s just say for now that every appointment I had left me feeling a little bit dazed.

So why put myself through it at this age?  I have a stable job, a home, a dog and, on paper, I should have been content to just keep going like that.  But ultimately, I wasn’t thriving, I was more or less dragging myself from day to day, sometimes by increasingly bloodied fingertips.  And I could never understand why life so often felt impossible to navigate.

I now take medication that drastically reduces the noise in my head.  A quieter head has just about obliterated the constant gnawing anxiousness that has been my constant companion for as long as I can remember.  It still comes occasionally, but it’s not there all the time, and it doesn’t get to take the reins anymore.  My emotional responses in general are a lot less intense, but without making me feel numb, which is nice.  To me there is no worse feeling in the world than numbness.  I don’t even let the dentist numb my mouth for a filling.  I have been that way since I was a child.

You know that thing where you just think about doing something and then you go and do it?  I didn’t.  Not until recently.  Now I too can do things when I want to (though it does take a little work)!  No longer do I sit on the couch screaming at myself internally for being such a useless waste of space for not getting anything done while outwardly I imagine looking shiftless and uncaring.

The techniques I have spent years trying to make work (including spending an inordinate amount of money on apps to help me) now have a much greater rate of success.  It always made me feel like something of a failure that I couldn’t make them work for me before.

The other major things I have gained from diagnosis are probably less obvious to the outside eye, but equally priceless to me.  I have peer support.  For the first time in my life, I have somewhere I can turn to where I know there will be people who understand.  I could have accessed this pre-diagnosis, many people do, but as I alluded to above – imposter syndrome.  I didn’t feel like I deserved to.  I worried I was invading a space that wasn’t intended for people like me who were just looking for an excuse to be broken.  Perhaps you understand why I find the rhetoric I mentioned at the start so alarming?  How many struggling people will miss the opportunity to better themselves and their quality of life because they see such messaging and internalise it?  Nowadays I do everything I can to make sure that nobody else feels this way and suffers through alone.

I also understand myself a lot better.  There’s a lot to be said for understanding yourself.  Because it’s given me probably the biggest gift this whole process has given me.

I quite like who I am.

By CW.