Autism Late Diagnosis

Adjusting to late diagnosis of Autism

Maybe I could be autistic? I might be autistic, I think I am autistic, I am autistic.

In all stages of exploring our diagnosis, things will never look the same. When we first suspect our autism all the way to professional confirmation, that yes we are autistic, we are growing, changing and adjusting.
Don’t be alarmed if you feel confused, lost, sad, angry, upset, relieved, curious, depressed, happy or anxious. Having lived your life knowing you are “different”, trying to understand how you seem to fail where others thrive, believing we are failures or worse because we have been told this as truth for our lifetimes up until now, finding out about autism turns our perspective on everything upside down.

We must sort every experience, every memory of bad times, confusion, sadness, anger in light of our new understanding.

We must figure out our mistaken beliefs and the way we see the world because knowing we are autistic really does change everything.
No longer are we to blame for our worst struggles, nobody knew about autism, nobody saw it working behind the scenes in our growing up, our young adulthood, our mature years and for some of us into our older retirement age years.

Suddenly we can see how so many interactions and frustrations, sorrows and anger are due to our autism and the way we process information.
Our neurology sets us at risk for poor social interaction, for misunderstanding, causes stress and distress.
Now we can forgive ourselves, nobody knew! We can begin to understand our neurology, what our true strengths and our worst weaknesses are and begin to find new ways to live that accommodates our struggles.

We no longer have to feel guilty because we can’t succeed at so many things others have expected of us.

We can have feelings of triumph when we figure out new ways to succeed when we allow ourselves to do things differently.

We begin to find our true selves when we let go of self hate and the continual struggle to do things simply because somebody else expects us to.
This is like entering a new and foreign territory. There are no maps, no guidelines, no explainations about “how to” go about sorting our autism as part of our newly understood identity.

We must find our way by doing lots of self examination, recalling the past, digging at old wounds and bringing them forward in our minds to see how autism worked in those experiences.
There is a lot of “emotional homework” sorting out past experiences and figuring out what “really happened” and understanding how our autism and our own behavior and responses to upsets and hurts had its way in the mix.

The older we are and the more self protective behavior, ways to cope, and attitudes we have developed, the longer it will take to unravel our experiences, have insights, see alternatives, and develop new and better ways of living.

Please understand that this takes time, might take the rest of our lifetimes to really thoroughly understand it all.

Please be patient and kind with yourself and others as you sort it all out. Expect to be upset, angry, anxious, feel relieved and joyous, depressed, sad, or any other emotions, in cycles for a long time to come.

Truly, diagnosis changes almost everything we thought we understood, knew, believed about our selves and our own lives, our experiences and our interactions with others.

Diagnosis opens doors to relationships, helps us forgive ourselves and also others. Nobody knew! It puts everything in a newly understood place and can change absolutely everything about ourselves. We might feel disoriented and question if all this new information, these new feelings, this new idea can be right.

New diagnosis is exciting, discouraging, fascinating, depressing, interesting, frustrating, and will likely bring about healthy and also scary new changes.

Do self care and have compassion for yourself right now. It is a lot to sort and process, it is a lot to accept. It is OK to have loads of feelings of all sorts, and mixed feelings too. guilt, anger, sadness, joy, excitement, relief, and so on are to be expected. Make sure you allow yourself enough time and self compassion, rest, do self care, take breaks from learning about autism if it gets overwhelming. There is no rush, we waited this long for diagnosis, we can take our time sorting out those details we need to understand to get on with our new lives from this new perspective.

Over time things will begin to change and we become more comfortable with our diagnosis.

I suspected my own autism about 5 years ago, decided for sure I was probably autistic 3 years ago, and got professional diagnosis 2 years ago. (today is December 21,2021)

I am still learning about myself, my past, and having those wonderful “aha” moments when yet another unsuspected insight into my autism and my life experiences suddenly makes sense and falls into place.

2 thoughts on “Autism Late Diagnosis

  1. Thanks so much for validating me! As someone who was first professionally diagnosed in 2007 at the age of 20, I cannot relate to some of your experiences as a person going through diagnosis much later in life. However, I at one point lost my diagnosis and that same professional, while constantly changing my diagnosis around, said diagnoses really didn’t matter. That simply isn’t true, because a diagnosis does change everything, as you say. Needless to say I fought to get my autism diagnosis back.

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