How were the first few days after diagnosis?

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I waited for so long for the diagnosis appointment from the uk's NHS and the whole situation being self-diagnosed was very stressful. My family did not believe I could be autistic, I guess because I am female and was a well-behaved and creative child. They put all of my issues down to extreme skin problems. I have just been diagnosed (2 days ago) at 29 with ASD and my body is very stressed (v reactive skin/allergies etc) but I have no idea how I actually feel about the situation. Relieved? Ecstatic? Scared? It all feels very surreal.

I feel as if I need to talk, to wind up the last horrible year, but still nobody wants to sit down and have a proper conversation about it so I can't decide how to get closure. It would help if you could tell me...

How did you feel the first few days after your diagnosis?

How did being officially diagnosed differ from what you expected?

Ps. If anyone has questions about the actual diagnosis appointment (uk) I'm happy to answer them too

After some rapid mood swings to sadness I was soon back high as a kite for about a week, much much much relieved - had been worried that it might have been something else.

Closure is something that never seems to happen to me. Am blessed with 2 friends I can say virtually anything to, which is fortunate, am able to discuss my inner workings without fear of being judged. Members of my family have been supportive as well.

My diagnosis was intense - what happened is that my partner of 5 years dumped me just before it, and I had been relying on her to give a rank and file NT account. Instead I turned up without enough sleep and with the determination to be myself in the expectation of bombing the diagnosis.

Extreme praise extended to the team that diagnosed me, - they really were bloody good, and proof that the NHS isn't dead yet.

58 years old btw, diagnosed a couple of months ago.

I was only about four or five so I don't exactly remember. I also somewhat remembered I was placed in some sort of hospital or facility during the time (which I also can't remember). This was right after the diagnosis or around the time so things weren't going so well afterwards. This was also during the mid 90's right after the diagnostic criteria changed in 1994.

Just put that one together. I wished I would of remembered it better.

It varies a lot but for me very relieved and it explained a lot of why things happened in my life the way it did. Kind of a second birthday.

My psychologist told me on my first visit that he'd be very surprised if I wasn't autistic. By the time I got the official report it was a bit of a non-event. It wasn't a surprise in any way.

I am 27 and it was suggested back in December that I might have Aspergers and it was not until 3 weeks ago that I got my official diagnosis of ASD from a psychologist.

I had originally been diagnosed with ADHD when I was younger so for me getting this diagnosis came as a bit of a relief knowing that there was help out there for my issues.

How did you feel the first few days after your diagnosis?

I felt a little alienated. I felt a little relieved...like, maybe, finally this diagnosis was "it". It certainly explained a lot... It fit more than the others...

I felt a little apart from other people.

How did being officially diagnosed differ from what you expected?

I want expecting an ASD diagnosis. I didn't go in suspecting anything at all, just asking for a thorough examination. I had just recently been able to express to my previous doctor why I thought I might not have ADHD (I have speech issues, so communicating that thought actually took several years). But, what I said made ADHD unlikely, so I was referred for more thorough testing.

In the course of the testing, I had begun to fear that I would be labeled with scizophrenia. I was very relieved that I was not.



After the first few days...over the next few months...

I think I kind of became "more" ASD...from things I read. I really doubted my social skills. Now that's it's been much longer, I can see my social skills were never really in that much trouble. I just needed to look more objectively over my life and try to worry less. Reading a lot about ASD helped me, but I honestly do think it exacerbated some things for a little while. I think it was just part of the journey.


Hugs to you b

How is your family reacting to the news?

I was a blind diagnoses, a group of doctors were evaluating me and didn't know what was wrong with me. I found out MONTHS after the diagnoses, the system here is very broken, I was evaluated twice by different doctors and they basically just sent me over to a ASD therapist for children without informing me or my father why, and that's when the therapist told my dad that I was autistic and he only told me 2 months later.

I was sorta shocked but I always kinda knew I was different and that I wasn't keeping up with my peers on a social and developmental level but I never would've thought I was autistic (knowing very little about it). the following years were obsessive, stressful and emotionional and I'm only adjusting now. But the first 3 days after my diagnoses were dream like, I did a ton of research and tried to understand what it ment to be autistic.

Interesting thread, I have my 1st assessment on Thursday, it was supposed to be in August (was a bit annoyed about that but now that I'm used to the idea, I'm glad I don't have to wait).

Not getting diagnosed would be much more of a shock for me at this stage (I've been self DX'd for years now) but I still have that niggling doubt asking 'What if I've been wrong all along... or worse; what if I'm unable to communicate my problems effectively and end up misdiagnosed?'

I'm pretty sure they are going to do a decent job but I'm still finding it stressful, I'll post again once I'm further through the process.

I was in denial.
Im not sure why, either I didnt understand it or just didnt like the idea of someone else labeling me as 'inferior' or abnormal in any way.

Thank you everyone for your replies. I won't try to reply to you all individually as I'll be here for hours (can't stop typing lol), but each was very helpful. It seems we all react differently because our circumstances were different. The one thing we all seem to have is the need to know about ourselves in-depth, but inability to get as much information from people as we need eg. not knowing who to go to or how to start a conversation about our problems without making someone worry or over-react.

My family is a bit shocked and I guess I just need to give them time to adjust to the news, stop re-analysing me and learn how they can help. Since the diagnosis they have not been un-supportive, but I still feel as if they are reluctant to look into it themselves.

My mum said she'd called her friend, a fellow Occupational Therapist with experience of autism, who knew me when I was little (they are not often in touch except via email so I'm guessing she called for the purpose of chatting about me) and her reaction was "No way!". That's all I know about anything anyone has said about it. Still no-one fully believes that a seemingly quirky-but-nice person could hide it and "cope" for so long.

It hurts that they didn't listen before and thought I was deluded for a year and a half (I am an intelligent person and never been the kind to make the most of illness etc.) but will seemingly accept it now 2 specialists have ticked some boxes. I feel like I should get an apology for the way they reacted after I self-diagnosed, but don't want them to feel bad for not recognising the autism, as it was my choice to hide my problems from them. My auntie said she feels bad about not seeing it when I was young but they had no reason to worry, other than look after my physical symptoms, which they concentrated on and were always sympathetic about.

Their reactions have been so measured and "correct", but I just want to know what they really think, so I can address it properly. I want to sit down with them and watch a couple of lectures about it (probably Sarah Hendrickx and Tony Attwood), so they can see it's not some horrible thing and see how my brain works. It would save a lot of annoying conversations trying to explain how we don't have to 'lack empathy' to be autistic. I think it SHOULD be reasonable to ask them to do that, but it will almost definitely be seen as an attempt to "convince" them I'm autistic by presenting these kind of informative-style videos. I think their attitude is "well just because she's autistic, nothing has changed. we support her already as she is and it's just a label". This seems like the perfect attitude, but I just need to talk about it right now.

They are going to attend the post-diagnosis appointment, and I'm hoping that hearing it from the specialists that will be the end of the whole situation. The ironic thing is my mum just finished a course in family therapy, on top of being an O.T, and is brilliant at her job but I think she just finds it too painful to apply the techniques to her own family right now (they all have other awful situations going on at the minute so this isn't great timing).

Before my assessment began I had felt personally convinced that I was on the spectrum -- jump to when my evaluator told me I AM....and oddly I could hardly believe I'd been correct! Or that SHE was correct! I know it sounds weird and contradictory, to feel sure I was going to be confirmed as being on the autism spectrum, and then when it is confirmed my reaction over the next 24 hours included a "Really?......" element. I think it was just the sheer shock of having been "right" during the years I self-suspected. I don't always feel like I'm right about anything much, so I guess it was that.

The rest of my reaction was the opposite -- a deep sense of "I told you so" that I felt inside myself toward a few dozen people from the entire span of my life, who had figuratively kicked me around for my difficulties and my struggles. I felt vindicated and like something was explained about myself. Not an excuse, though, a reason, which is different.

With that, though, also came a kind of grief process where I felt like wounds were reopened. I felt hurt all over again for what I felt were injustices in all of my past. My family have estranged me and I wished they could know this truth about me now. I have to be honest and say there was also a negative emotion of anger toward the people who had wronged me if the wrong was specifically regarding an aspect of what I now knew was a struggle arising from my neurology and not just a genuine personal failing I could have "done better" at.

So there was a mix of relief but also bitterness, as I was 52 and it felt very late to be finding out I could have given myself better understanding and management techniques all along -- and so could other people...I'm glad to finally know, but I also can't help feeling very complicated sadness about not having known sooner in life

Like others have said, I could look back and see that is sure explained a lot of my past. I had known for some time that something was wrong with me, and had been searching for a diagnosis, but no other disorder seemed to really explain everything: ADHD, Borderline Personality Disorder, etc.

After a while, depression set in, realizing all of the things it cost me in life. How I didn't get to have a normal high school and college life like most people.

Later, it was almost freeing. I didn't have to live up to the expectations of the NT population because I am not an NT. When I compared myself to other Aspies, I appeared normal! The reason I had the failures I did in parts of life was because of my disorder, that is what happens to Aspies.

But I didn't stay as a failure. I eventually achieved almost all of the things that NTs do, it just took me longer.

We've always known I'm not 'normal' to most other people, but it wasn't suggested I might be on the spectrum until Dec 2012, which came as a shock to me, since my brother has always been the autistic one. Later that night I took all the online tests and they all said I was. So when the psychologist a few months later said that I fit the DSM, I think I had already gotten used to the idea. It made everything make sense, and helped me realize why I would never fit into society like they wanted me to, and that it was ok.

I would like to encourage you to not be too caught up with what your family thinks. They can think you are a goose...doesn't make them correct.