Post diagnostic counselling

There is a wealth of experience on here but, as a result of the dearth of post diagnosis support, most of us have been left to try and find our way through alone and in the dark.

Personally it has not been an easy journey. I have described it previously as an emotional rollercoaster.

I'm three years into my post diagnostic discovery journey and I believe I am over the worst (hopefully). However I think it is still an ongoing process that could potentially last for the rest of my life.

I don't think I handled it well at all during the first couple of years. I was totally unprepared for how I would react emotionally. 

The actual diagnosis was great. I felt elated and it came as a huge relief. Finally I understand what was behind my lifelong anxiety, sensory and communication problems. Finally I felt understood and validated for the first time in my life. Finally I realised that what had happened wasn't my fault and I had not failed in so many areas, as I had previously been led to believe.

I was initially very optimistic, overly so. I believed that now that I knew what was the cause of my anxiety that I would be able to access therapy that actually worked. I wrongly believed that if I told people I was autistic they would understand and be willing to make reasonable accommodations.

However that did not last. Childhood and adult trauma had been brought to the forefront of my mind during the diagnostic process. I was trying to process that, through my new found autistic lens, on my own and badly struggling. The autism specific therapy I had hoped to access proved to be non existent. People I disclosed to clearly did not understand autism and did not even try to, they continued to expect me to push myself and mask in order to fit in.

Within a few months I had hit a real low. I became extremely angry about past and present injustices and lack of understanding. Describing it like a dam bursting is a good analogy.

Everyone is different. We all have different life experiences leading up to diagnosis. We have different support networks and coping mechanisms. We have different autistic profiles. For that reason, whilst a simple one step at a time process would be wonderful, I think you are right that it isn't that simple unfortunately. 

The only relevant resource I have found is on the Aucademy website, identifying some common reactions during the post diagnosis discovery journey. Not everyone will experience all of those and not necessarily in the same order.

https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/

Looking back I can identify what I wish I had known at the point of diagnosis.

I wish I had known that support for late diagnosed adults does not exist and been spared that disappointment.

I wish I had understood more about masking, that it is not something that could be switched off at will. That most of it started at a very early age and has become automatic and subconscious.

I wish I had realised that I would still continue to experience all the same problems and issues as I did before and still be completely misunderstood by most of society.

What helps? That is a hard question. I would say the main thing is time to process, think in terms of years rather than weeks or months. The other thing is the typical autistic response of intense research. I have immersed myself in online autistic content, learning as much as I can about it and how it affects us. Oh and being on here of course 

There is a wealth of experience on here but, as a result of the dearth of post diagnosis support, most of us have been left to try and find our way through alone and in the dark.

Personally it has not been an easy journey. I have described it previously as an emotional rollercoaster.

I'm three years into my post diagnostic discovery journey and I believe I am over the worst (hopefully). However I think it is still an ongoing process that could potentially last for the rest of my life.

I don't think I handled it well at all during the first couple of years. I was totally unprepared for how I would react emotionally. 

The actual diagnosis was great. I felt elated and it came as a huge relief. Finally I understand what was behind my lifelong anxiety, sensory and communication problems. Finally I felt understood and validated for the first time in my life. Finally I realised that what had happened wasn't my fault and I had not failed in so many areas, as I had previously been led to believe.

I was initially very optimistic, overly so. I believed that now that I knew what was the cause of my anxiety that I would be able to access therapy that actually worked. I wrongly believed that if I told people I was autistic they would understand and be willing to make reasonable accommodations.

However that did not last. Childhood and adult trauma had been brought to the forefront of my mind during the diagnostic process. I was trying to process that, through my new found autistic lens, on my own and badly struggling. The autism specific therapy I had hoped to access proved to be non existent. People I disclosed to clearly did not understand autism and did not even try to, they continued to expect me to push myself and mask in order to fit in.

Within a few months I had hit a real low. I became extremely angry about past and present injustices and lack of understanding. Describing it like a dam bursting is a good analogy.

Everyone is different. We all have different life experiences leading up to diagnosis. We have different support networks and coping mechanisms. We have different autistic profiles. For that reason, whilst a simple one step at a time process would be wonderful, I think you are right that it isn't that simple unfortunately. 

The only relevant resource I have found is on the Aucademy website, identifying some common reactions during the post diagnosis discovery journey. Not everyone will experience all of those and not necessarily in the same order.

https://aucademy.co.uk/2022/01/20/six-common-reactions-during-autistic-discovery/

Looking back I can identify what I wish I had known at the point of diagnosis.

I wish I had known that support for late diagnosed adults does not exist and been spared that disappointment.

I wish I had understood more about masking, that it is not something that could be switched off at will. That most of it started at a very early age and has become automatic and subconscious.

I wish I had realised that I would still continue to experience all the same problems and issues as I did before and still be completely misunderstood by most of society.

What helps? That is a hard question. I would say the main thing is time to process, think in terms of years rather than weeks or months. The other thing is the typical autistic response of intense research. I have immersed myself in online autistic content, learning as much as I can about it and how it affects us. Oh and being on here of course 

Thanks Autonomist.  You have ratified my assessment with your experience and I will take on board the recognition of not taking it too well emotionally.  Time to process is important though tricky whilst one has the rest of what seems an unfairly complicated life to continue to engage with.  I will check out the link you kindly shared.  All the best :-)