Why are some people devastated when they get an ASD diagnosis?

I'm still waiting for my assessment, and I'm not sure exactly how I'll react if I am eventually diagnosed with autism, but I think I will be relieved. However, I've been through a lot of different emotions while I'm waiting, many of them to do with things which have happened to me, and mistakes I have made in the past. That might be a reason for some to feel devastated, not so much about the diagnosis itself. There is a lot of stuff to process.

Another factor could be that the diagnosis is made on the basis of perceived deficits and disabilities, rather than things autistic people are good at, so it can't help seeming like a very negative thing. (Add to that the frustration at other people's perception of autism, and the knowledge that the diagnosis is unlikely to make things any better in that regard.) One of the most negative groups I ever went to was a parents "support group" which was supposed to help me to come to terms with my son's autism diagnosis, but which often made me feel worse. I stopped going after being insulted by another member for not believing that the MMR vaccine was the cause.

Being in contact with others who have already been through the process and have found their identity, and have positive things to say about autism, is a huge help.

I'm not sure that "devastated" would be the word in my case.   However, after decades of issues within my family, I felt as though I'd suddenly been handed the key to much of it.  It suddenly felt as though, with knowledge, care and awareness, states of severe burnout or depression could be avoided, possibly along with lots of more minor misunderstandings and their consequences (which over the years had a cumulative effect).  It felt shocking to understand that a lot of pain could have been avoided or at least understood.  Although, looking back, it's now clear that autism runs in my family, this knowledge comes too late for many.  Several members of my family have lived and died without ever knowing. 

So...  my approach was what I thought was the very logical step of finding out more about what had been going on in my family and presenting myself for assessment.  I expected to simply learn more and I'd already self diagnosed and accepted that i am neurodivergent.  But, oh, the years of pain, ignorance, lack of understanding and non acceptance within my family.  The formal diagnosis confirmed my thoughts, I couldn't ask any of the questions I'd brought with me, and my eyes welled up uncontrollably.  Being different without understanding the nature of that difference exacted a huge cost, I think.         

I think most people who are 'devastated' are so because they don't have a good understanding of what it means - other than suddenly they have this label that has a lot of negative connotations...

Also, it's like anything having something go from being a suspicion to 'official' can be upsetting.

I'd suspected for a long time I was 'on the spectrum' but even so, getting my diagnosis in March at age 47 still sent me into a period of 'mourning' for the 'me' that I thought I'd lost...

I often get told that all men are a bit autistic, and that everyone is somewhere on the autistic spectrum. So I haven't really had any proper emotional support from family or bosses at work.

The way I live and look at the world is "normal" to me. So I find it easy to not get upset when people dismiss my ASD diagnosis with such flippant comments. Even now I am not sure what to say to make them think differently. I am used to my ASD since I know no different. So it sometimes does feel more like a personality quirk than a disability. Not far removed from the ordinary quirks that most people have (eg most people hate a certain food - for example rice - that most other people like).

Joe

I was initially very happy. But I did find it difficult to come to terms with. I can think of three things right now that made it an emotional experience for me:

1. The acknowledgement/validation after having to fight hard to get a diagnosis and being dismissed/ignored in the past when asking about autism. I couldn't fully believe I was going to get the diagnosis until it was confirmed; I had to keep thinking it might not happen so that if it didn't I wouldn't be so disappointed. But that meant it was harder to get rid of those doubts.

2. Strong feelings of grief, due to missed opportunities in the past to get the help and support needed to cope/succeed/fulfill one's potential, and time spent trying to do as people wanted when it clearly wasn't the right thing, and being given the wrong treatment for mental health difficulties that happened as a result of the undiagnosed autism, and not being listened to, and frequently misunderstood.

3. Disappointment when things are still tough and there isn't that much help out there. Of course this will depend on where you live and what services are available, and also on whether or not you struggle with low mood/depression which will magnify anything you think about the negatives in your life, and also harder to see any positives.

I wouldn't use the word 'devastated' to describe my experience of being diagnosed, but it might fit with some of the other emotions that come along with diagnosis. Also, a fourth possible thing that might happen is being happy to be diagnosed, but then met with incredulity, disbelief or rejection from someone who was expected to be supportive.