Reaction to Diagnosis

I don’t know if it is the same at any age

I have not looked at any studies, but I participate in several autism based groups online. Ideas stated here have for the most part been formed on my own experience with encountering autism, and reported experiences from adults in online groups I belong to.
Each person’s experiences and perceptions will of course be different.

I think it might be a bit more difficult to shift gears as we age. Autism is known to cause rigid thinking. We older autistic folk have had plenty of practice at forming rigid ideas by the time we reach our 60’s.
Is late diagnosis of autism more shocking to those of us who are elderly? I suspect that it is.

As older adults, we have overcome or adapted to many struggles alone.
We have spent a lifetime believing we are “normal” but also believing we are somehow different, incompetent, selfish, bad, wrong, stupid, useless, thoughtless, inept, uncaring, rude, intrusive, hateful, and on and on… a litany of fixed ideas in our older and less flexible brains, learned in our earlier life and more or less accepted as inner truths because we did not know about autism. We have set ideas about ourselves and others and how the world as we see it works.

We may have wondered why we struggled, but learning at last,( although it is sometimes a relief), that autism is the answer, we may suddenly find ourselves scrambling to find a new platform to view our innermost selves.

It is as if the ground we have stood upon for so many years is crumbling.

The foundations of the house we built our ideas on is being torn down.

We will need time to replace these with ideas about our selves and how our diagnosis of autism makes everything different.

Many older people report feeling shocked at first, even though they knew, deep inside that somehow they were ‘different’.
Knowing about autism changes all of the concepts and precepts we may have held about ourselves and our world.
Knowing that we have been wrong in the way we understood almost everything in our worlds, well, that is a lot to digest!


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Let me insert a warning here. Your autism is hugely important to you, but it will be of little consequence to most all of the people around you. They will be likely to react by passing off the information of your self discovery lightly, and assuring you that they still love you etc. .
They will be likely to make ignorant statements about “everybody being a bit autistic” or they will deny it… never mind, don’t argue. Don’t take these things personally. Your diagnosis will mean the world to you, but as in all things, most people will not be able to understand and since it doesn’t affect them personally, most will simply not be very interested. That’s OK. It does not mean they do not care about you, they simply don’t see the significance of your discovery. But they will see the results as you work though your new understanding of your self!


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Learning about our autism is a shock in the way that a sudden loss is… but this is loss of self identity.

Most people newly diagnosed with autism report going through the stages of grief. Shock, denial, bargaining,sadness, anger, acceptance. All appear and disappear, in any order, in rapid transition or slowly over days and sometimes years.
Do not be surprised at your emotional responses to finally learning you are “on the spectrum”.

My major reaction on figuring out I have autism/am autistic was relief. I knew there was something different about me, but had not a clue as to the nature of my struggles or why I seemed to have so many difficulties with things that others seemed to find easy.
I have been grieving in an ongoing way for years, but now I have an answer for that too. I have been sad for the loss of opportunities and things that ‘might have been’. I have regretted so many incidents of the past where I made bad decisions, misunderstood motives, misjudged so many people or situations. I have been angry over many of those things too. Nobody knew!
Feeling cheated of an ordinary life (whatever that is!) and wishing I had known or simply not been given autism as my share in life, feeling extraordinary relief and curiosity on learning how I was different and why… all going round and round inside me.
I bet you will feel similar things and a whole range of emotional turmoil. It is like being engulfed and having to learn to swim. Not a piddly little word, but one with great meaning and consequences “autism”.


Newly diagnosed with autism means loads of emotional homework, lots of looking for new ways to interact with one’s world, and new understanding of so many painful things from the past.
Please give yourself time to process all the new information, the new ways of looking at life and others, the new things you learn about yourself.
It took a lifetime to learn all the ideas that now are being shaken and tested from new perspectives.

Many new ideas will take the place of some old “stinkin’ thinkin’ “. , Many old ideas will be discarded, pains will be dug up and revisited from new perspectives.
I like to say I am a work in progress. My growth in understanding of my world, my self, and everything that applies to these things has been phenomenal. It has been the most exciting thing, freeing, uplifting, a sort of fresh start in a new and better world, to learn of my autism and to learn how to live better through my better understanding of how autism has touched every part of my world for the previous 65 years before I knew, before I began to understand so many answers I found when I found out about autism.


It is my deep hope that the medical community and those learning about autism to apply to professional practices today will be able to help not only children and families dealing with autism, but will be able to diagnose and explain their autism to old people just like me, but who remain still undiscovered and struggling with their Autism without knowing.

3 thoughts on “Reaction to Diagnosis

  1. I think you’ve hit on something important here that should probably spur mandatory counseling when receiving a diagnosis. There is a readjustment that needs to take place, and while you’re the same person, the way you think about yourself is flipped upside down. My adult diagnosis was Tourette Syndrome, and while it was initially a relief to figure out what was wrong with me, over the years, I too often hold it up as proof that I’m damaged. I’m just starting to understand this phenomenon fully after five years with my diagnosis. I’m guessing it’s universal and should really be addressed by the neurologists making the diagnosis. My son was recently diagnosed with autism (14 y.o.) and and least with that came a recommendation that he get counseling (really skills training). We were just contacted the other day that our wait-list is over and we’re ready to start. Hopefully counseling on the realization that there’s a medical condition behind the areas where he struggles will be included. So far, he hasn’t accepted it. Best of luck to you. I think it’s awesome that you’re writing about this.

    Liked by 2 people

    1. Thank you, I like the idea that the diagnosing entity would add explanation and some words of suggestion about possible emotional reactions and offer help or referral to therapy if desired. Great insight and suggestion.

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  2. Further counseling *should* be a part of diagnosis, but it can’t be made mandatory. I doubt that every single person qualified to diagnose is also qualified to serve as a counselor. It’s reasonable and realistic to expect a referral, though.

    Liked by 2 people

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