hello, first post with person thoughts on accepting a late diagnosis of autism

Hello,

A quick introduction I am a 51 year old who was only diagnosed 2 years ago, after problems with a sexual assault at work brought my world crashing in around me.

With help from my wife Diana, my therapists and members of an autism acceptance group I am beginning to see some light at the end of the tunnel. For our groups last meeting I gave a talk on my journey in accepting autism or rather its challenges in my/our lives as my wife is affected as much if not more.

At her encouragement after a positive reception by the group I have joined this community and am sharing these thoughts as if I had been able to read this two years ago life might have been easier. Obviously I am no expert and what works for me wont work for every one, so please remember I am not trying to tell anyone how to accept autism just sharing some of my journey in the hope that if some things resonate it might make your own journey easier.

and so to the post on accepting autism, please share any feedback good or bad 

Dave 

 

Thoughts on Accepting Autism.

 

What follows is a personal reflection and account of my struggle with the challenges of living with and accepting a late diagnosis of autism. If some of this resonates with your own experiences and is helpful great, if you are left thinking well that's not right even better as it shows that you have a good grasp of your own experiences and what is meaningful to you.

I can't offer a perfect answer on how to accept autism because just like the state of being the label autism describes the answer to the question will be different for everyone, but maybe within the rich tapestry of every personal answer there are some common threads that can be shared and the sharing might help to weave your own answers to the question of how to accept autism.

 

Where to begin?  Perhaps by considering the two little words accepting autism, a simple enough pairing and yet the more I think on them the more questions seem to confront me.

What exactly has to be accepted? Who has to accept autism? Acceptance implies that there is a choice is rejection an option? Just two words but the range of questions they generate seem endless, but they all at least seem to share two key elements who and what. Who has to accept autism and just what is it that they have to accept?  A companion question to these is why, does acceptance change anything?

 

As this is not a “who done it” book there is no point in waiting for the last page to reveal the answer?  I want to suggest that acceptance is not just important but essential if the autistic is to begin to feel that the world and their part in it make sense, and a key part to achieving acceptance is unconditional love, love of yourself and the love of those closest to you.

 

The most straightforward of these to answer is the question of whom. For me it seems there a three groups that need to accept my autism, there’s me, there’s those close to me the people I share my life with and then there’s the rest of the world people I might have the most fleeting encounter with or might never meet but who’s acceptance of autism and its challenges can never the less have an enormous impact on my life.

 

What has to be accepted  is more problematic as in a world that loves to label and categorize accepting the label for me at least carries the risk of being defined as nothing more than that and everything I say or do being judged through the filter of people's assumptions of autism.

And now a pause, that’s twice I’ve used the word label. I am not suggesting that autism is just a word but rather trying to recognise that the term autism is used to group a richly varied portion of the population who’s experience of being is sufficiently different from the majority to be regarded as worthy of a note, but with enough similarities to each other to be grouped together.

It might help to think of people as edible plants the neurotypical cover the majority but with the autistic being represented by fruits. You only need to walk down the isle of any supermarket to see that there are a myriad of colours, flavours and textures of fruit and some at the fringes like strawberries and tomatoes that don’t really seem to fit the strict definitions.  So it is with autism six letters to try and describe and categorise millions of individuals and for me at least having been identified as possessing enough of the qualities that are used to define me as autistic I must now work out just where I fit on the autism isle.

 

So when considering what it is I have to accept the label is just the beginning, what I and particularly those close to me have to accept are the particular qualities of my interaction with the word that mark me as autistic. The label does give a nice neat cut off point in that having to accept autism starts with the diagnosis.  Before the diagnosis I was perhaps viewed as strange, eccentric somehow different from the majority but now learned professionals have agreed that my differences are different enough to be grouped with others with a set off behaviours they label autistic. I haven't changed but with the stroke of a pen many of the things that I have struggled with throughout my life have new names with neurodevelopmental explanations; I am no longer clumsy but suffering from dyspraxia. Changing the  name doesn't change me I still leave a sprinkling of sugar by a cup when I make a coffee, chopping and peeling vegetables often involve a little minor blood loss and plates and cups still risk mysteriously acquiring chips when I do the washing up.  I still sometime miss the sofa when I sit down bouncing anyone unlucky enough to be sitting next to me so what’s the point of having the diagnosis if nothing changes?

Is the application of the label following diagnosis just a convenient bureaucratic aid for "everyone else"? Is it just a passport to certain rights and legal protections that are applied with varying degrees of reluctance by the others? Despite being lumped in with the medical world for diagnostic purposes to borrow a line from the Who "there is no cure no untried operation all hope lies with him and none with me" Autism despite the medical appropriation isn't a disease. Like your sex, the colour of your eyes or your dominant hand it’s a part of you from birth but unlike those other aspects of being the label is applied later.

If the day to day personal experience doesn't change why have the label and what makes acceptance difficult? For myself with a late adult diagnosis it was news that came after  two years in limbo waiting for the diagnosis, two years like the cat in Schrödinger’s experiment but rather than (alive and dead) I was autistic and not autistic two years  simultaneously  struggling with treatments for mental illness that were at best well intentioned but inefficient and at worst actively harmful a diagnosis  greeted with a mixture of relief, anger, sadness, numbness and confusion who or what was the real Dave.

 

The point of diagnosis can be seen as the start of a journey of self discovery looking at and reinterpreting my life and experience finally making sense of past struggles; at this point I must mention that in this I have not been alone but helped and at times carried by my wife Diana who has endured the meltdowns, tears and tantrums with towering strength and unconditional love.

In contrast the relationship with my mother has suffered, a mixture of denial (you can't be autistic I was trained to spot it) and accusations that learning and understanding my differences actually causes them. I don't for a moment doubt my mother's love but there is a transactional element I should be focusing on being the son she wants not leaning to live with the real me. My wife accepts my mother wants to change.

A simple example can illustrate, pre diagnosis an ongoing frustration for my wife was the almost ever present dusting of coffee and sugar on the work top after I made a drink interpreted as an example of a total lack of care, add in the ability to forget about the mishap as soon as I brought the drinks in you can sympathise with her frustration. Post diagnosis there is now a tray we've accepted that no matter how I try some grains won't make the cup so rather than worry about it make the mishaps easy to remedy a moment under a hot tap and a quick wipe with a sponge problem solved. I haven't shared this solution with mum because she would see it as giving in and her focus would remain on trying to make me not spill. A curious side effect is that with the consequence of mistakes less of a problem I'm more relaxed and have fewer mishaps. A tray isn't a prerequisite to acceptance, and recognising that a tendency to spill isn't a lack of care or some passive aggressive protest at making coffee but rather a fundamental problem with fine motor skills is just one small step to acceptance of autism. It isn't a crime to recognise a problem and find a work around.

This example also highlights perhaps the hardest part of acceptance for me and I suspect many others we are constantly pushed to "improve" get better and told in varying forms there's no such thing as can’t! You can do anything if you try etc. This well meaning lie doesn't sit well and certainly often left me feeling both defective and a failure. At seven a teacher explained that accepting that I was a poor speller wasn't sufficient I had to do something about it, how could I  explain to her that the letters jumbled and that I didn't see the mistake and so to avoid lots of red sp circles I stopped using certain words wrote with a stilted and curtailed vocabulary. I still spell badly but now my friend word just marks red lines and offers suggestions no shouting and no tears another work around.

For me it seems that accepting my autism is accepting myself as I am and not trying to force myself to be something I am not and can never be. So with apologies to Mrs Booth, I’m happy to accept that my spelling is atrocious (the red line came and with a click the correct spelling erased my mistake and so I can use atrocious instead of bad) no stress, no tears no foul. Now if I need to decant something to a jar then I can ask Diana or find a large bowl to catch the spills and a cloth to wipe the jar at the end life is easier if you stop fighting who you are.

 

If accepting autism for the autistic is really accepting those traits that add up of the assessment used to award you with the diagnosis what then of those closest to you?  They don’t get to join the club but often get stuck with cleaning up the mess and fighting on your behalf.

 

Here a mix of love and honesty help. A friend at the autism acceptance group Catherine has remarked on more than one occasion of Diana’s freedom to share my failing or irritations while I sit there.  Diana accepts that my autism creates challenges, but I have to accept that these challenges can be exasperating, exhausting and at times plain and simply annoying. Accepting my autism doesn’t mean she has to like everything and I have to accept this. Acceptance goes both ways I shouldn’t feel guilty about things beyond my control but that doesn’t mean the impact can just be ignored. Similarly Diana shouldn’t feel guilty because sometimes my actions or more often lack of actions drive her up the wall! The more we discover and the more we talk the better things get. The first time I forgot to bring her cutlery and sat eating for several minutes before asking if there was something wrong with her food was not a good day! Now these lapses are met with humour and directness, I’m not sure what caused the lapse in concentration the other day when I brought an empty plate but we could share the moment of realisation as I scurried to the kitchen to get the ham that was sitting nicely on the chopping board and Diana laughingly observed “you forgot to put the meat on the plates!”

As I promised Diana to keep this short (definitions of short vary) the challenges of other and their sporadic acceptance will wait for another day but for now to conclude accepting autism is actually about learning what it is that makes or marks you as autistic and embracing it! You can’t change it and fighting it will only cause wasted energy and deeper harm, and for your relationships with those close to you remember they can love the autistic while struggling to like and cope with the consequences of your autism.

 

Our condition can make us feel vulnerable and isolated and so it’s easy to build walls but remember to leave a door to let the trusted few in because the there is a danger that your wall keeps everybody out.

Earlier I borrowed from The Who’s Tommy and so will close with the end of Pink Floyds the Wall

 

"Outside The Wall"

All alone or in twos
The ones who really love you
Walk up and down outside the wall

Some hand in hand
And some gathered together in bands
The bleeding hearts and the artists make their stand

And when they've given you their all
Some stagger and fall, after all it's not easy
Banging your heart against some mad bugger's wall

 

Thanks for reading

Dave

NB the line from Tommy is a slight misquote, based on my mishearing I have used cure instead of chance but even with the lyrics before me I always hear cure as it seems to resonate more and so I have used what I hear.