Late diagnosis
& the grief response

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A diagnosis of autism later in life is such a profound change that it is common to go through a process akin to grieving.

* This article has been slightly adapted from the one on my Medium channel. You can read more here. 

When I was diagnosed as autistic at the grand old age of 46, I was overjoyed - for many reasons. But after my diagnosis I went on a rollercoaster ride of emotions - something that is very common after a late diagnosis of autism. Here is my perspective on this in my own words.

 

Grief can be described as the conflicting feelings that can be caused by the end of, or change in, a familiar pattern of behaviour. So grief isn't just caused by a death or an obvious loss, it can also be caused by a significant change. Learning that you have been autistic your whole life, even though it was never acknowledged, is indeed a very significant and profound change in your reality.

Any grieving process, for any reason is always highly individual, but you can expect to feel such emotions as anger, denial, depression and many others, in order to process everything and come out the other end of the acceptance tunnel. The process can last for months or years, sometimes taking two steps forward and one back, so it is important to be patient with yourself.

Finding out that we are autistic in later in life can bring with it a whole range of emotions and revelations. For many, there is an enormous sense of relief - a sudden dawning of awareness and understanding of themselves. But whether finally getting your diagnosis makes you happy and relieved, or whether it leaves you feeling devastated, sad or indifferent - you can still experience a form of grief because it is new information about yourself that you never knew before. And the older you are when you get your diagnoses, the harder that can be.

 

For some people it feels as profound as suddenly being told, late in life that you were actually adopted at birth. Or that something you had always believed to be true in your family, has suddenly and unexpectedly been revealed as a lie or false. This causes a shift in your world of reality. Something you thought was a given, has just been completely upended.

 

For many people, discovering that they are autistic is often a huge relief after so many years of struggling to make sense of the world. But even if this is the case, it can still feel like a rollercoaster ride of emotions: your emotions will rise and fall as you begin to reframe your life up to that point. While for others, it's something they've long known or suspected and are therefore able to more easily accept.

 

For example, you may experience sadness or anger that you were not diagnosed sooner. Perhaps you feel this would have made your life easier, or prevented situations that have caused you pain or trauma - such as bullying, bad teaching experiences, or abuse. You may experience anger at the world for making you this way. Anger at your teachers or family for not picking it up sooner; angry that you never received any support and understanding.

 

You might experience denial and begin to question the diagnosis. You may experience guilt for some of the things you may have said or done because of the autism, and yet weren't aware of the hurt that they caused at the time, or of the reasons for your behaviour.

 

You may experience extreme regret and anger and pain, because not knowing your authentic self led to many failed relationships or marriages. You may feel that you failed somehow as a parent, because you didn't know about your neurodivergence. You may not have been able to find appropriate work in the past. You may think 'if only' a lot.

 

You may even feel extreme sadness and loss of yourself. The you, who you were before the diagnosis. Of course it is the same you, but what was 'known' or a given, has changed. It's possible that you may be feeling really negative about the diagnosis in general - perhaps because of assumptions you have about the condition, or the attitudes of people around you. Films and media, and people’s opinions affect us on a deeply sub-conscious level, so if your view of Autism has been predominantly negative, you may well struggle even more through this journey.

 

This is what I mean when I say to people that they can expect to feel grief and to go through a very individual process in doing so. But this process enables you to learn to accept this profound change that has occurred in your life, even if you are happy about it.

 

At times you may direct these emotions in on yourself, even though you know you aren't faulty and haven't done anything wrong. But this is normal and it is in these moments particularly that you have to be kind to yourself. Talk to yourself like you would a dear friend or relative who was saying these things. Find others in your new ‘ tribe’ and learn as much as you can about your own neurodivergence.

 

Most of all, know that this ride towards acceptance of this change will doubtless be bumpy, but you will get there. Allow it all to happen and understand that these are all totally normal and very human reactions, which are necessary to help you reach your final goal - acceptance.

 

Only then can you move beyond acceptance towards the rest of your life. You are still you. You are still - and always have been - a beautiful human being. You may have discovered some extra challenges, but you will eventually be able to appreciate the joys, and positives that naturally come along with being autistic.