Feeling vulnerable and invisible after diagnosis

Hello,

I have no advice, just wanted to say you've summed up very nicely exactly what I'm going through at the moment. I'm a healthcare professional in my 30's and was diagnosed earlier this year.

I only had an assessment because it was suggested by my therapist, and to be honest I did not expect to get a diagnosis, nor did I particularly want one. The report itself was awful and I don't agree with a lot do it, or how it is worded. But having talked things through further with a psychologist, and doing further reading myself, I do think the diagnosis is correct even if the report is a bit rubbish. But now I feel like the rug had been pulled from under me and I don't really know who I am anymore. It's hard.

Hi Leaflady4 

Yes I can relate.

Late diagnosed healthcare professional myself too :-)

Not knowing who oneself is in context - yep.

As Lonehare12  indicates "seeing life thro' a new lens" part of this.

Also perhaps that one is confronted with a diagnosis that is made by "deficit based" analysis, 

There is the sense that if this has been hidden from oneself and there are aspects of human behaviour that one might be "excluded" from direct insight into perhaps.  This contributed to a significant increase in the sense of vulnerability for myself.  As well as, in my case, coming to diagnosis with episodic burnout in the mix.

I am coming out of this now - worst issue is with workplace (ironically one might think!)

My part in healthcare system is as a therapist.  In context I have long observed that making a diagnosis is the easy part...

That sense of "walking it alone" chimes (somewhat discordantly to me with the original meaning of an autism diagnosis as an observation of detachment and inner reality.  A couple of suggestions to share as ways to consider this tho' that perhaps are less scarily pathological...

Being autistic in a heavily neurotypically biased society is hard work and one has internalised expectations about oneself based upon neurotypical expectations.  Yep no matter how damn daft they are we that conditioning took place.

So that kindof explains the sense of doing "what needed to be done" according to the neurotypical expectations but doing so that is in some way not authentic to what's the way the autistic you is made to live maybe?

I explained that same sentiment to my wife of more than 25 years... (doh! :-)  )    But... you're still the same person... we have known you've been weird for years...  hehe well I didn't, I've been trying to act normal for years!

It's really hard work having to act - let alone almost all the time, eg when one is socially engaged.  That's why it's a skilled profession that requires special training and when done well is really well paid and gets lauded so much.

From the perspective of other people being interested in you and letting them know what a big deal it is...

Hmmm... do they want to and are they ready for it spring to mind.  Maybe give them reasons why they might want to (like with a partner et al  how (even) richer will be in the relationship.  Maybe also engage them in "graded exposure" to the diagnosis and its implication.

This'll be conscientious maybe but.... I am now doing my best to lower my expectations of other people at the same time as lowering my expectations of myself.

So, in context if I'm really good and do the right thing and "be nice" et al then maybe I won't get chastised, excluded etc etc.  for what I was doing since I was a kid when I was simply being my authentic autistic me...

Anyway sorry to have rambled on 

Welcome to the club you have always been in but never realised it before! 

I reckon you're probably in the right place.

All the best wishes!

Very true, from the outside all probably seems the same.... if only people new the whirlwind going on inside the last couple years getting my head around this new self understanding. I can fully appreciate that many, perhaps most, don't have much knowledge of autism and I suppose without a personal connection they may not seek out any depth of inderstanding. I have noticed that work place surveys have started asking employees if they identify as neurodivergent so I guess that is promising for the future. 

I think you summed it up yourself: it's a big deal to you.

To everyone else you're still the same person you always were. They don't see what happens inside.

They don't know what to say as there's nothing to see. There is also not that much understanding, I wouldn't know anything much myself if I hadn't been diagnosed. (I never thought I was.)

In general though there is little information about the psychological issues. People just think you are quirky or anxious. And there's nothing much they can say to that.

Thank you, I can see from reading a few threads in the community that it is a very common experience. 

I almost wish in a way that my level of autism had a different name... as it seems it is a common thought process for many to compare the autism levels and insinuate that level 1s are somehow trying to take away supports from those with profound autism. Again it comes down to knowledge, many don't hesitate to comment and judge with very little actual knowledge of the autism spectrum.

Yes I have found most people I talk to know very little about autism. It feels like quite a hurdle to overcome with some, particularly when the curiosity is also lacking. I can see it's best at this stage to carefully chose who I share with and even then have minimal expectations.

Thank you :) 

Thank you Iain, I think all of this is very true. Worth adjusting any expectations I have. I suppose also, if I think about how I have communicated it so far to others, it has been fairly casually. I must be trying to gauge others reactions while also letting it settle in my mind. Looking forward to connecting with more autistic people in my life.

HiLeaflady4 

I was also diagnosed later in life, and that mix of relief and vulnerability felt very familiar.

Like suddenly seeing my whole life through a new lens.

I’ve had the same experience with people’s reactions too. My husband was pretty indifferent to the diagnosis and hasn’t mentioned it since. My son, who’s 26, has been much more understanding, but outside of that it’s often just polite silence

You’re definitely not alone in this.

Leaflady4 said:

I am also surprised that the few people I have told in my personal and work life appear quite disinterested by the diagnosis.

I found it useful to ask myself the question "why should they care?".

There are times where my lack of social skills extend to knowing what other people think or care about and this seems to be one of those times.

I would expect a partner to care (mine tried but failed), potentially a parent to care (although remember that autism is normally hereditary so they may be as poorly equipped to deal with it as me) but beyone that I doubt many family members are likely to take more than a passing interest then move on to the next episode of Strictly.

There remains such a stigma about any mental health issues that this may be scaring them away too, not knowing if you are just being revealed as some sort of crazy person.

This helped me put it in context that I was expecting too much of them.

It helps you realise who are those who really care about you.

Leaflady4 said:

I don't know how to communicate that this is a big deal for me

Don't expect this from family has been my experience. If you need someone to talk it through with then get a therapist - they know their stuff and can also help you with the coping.

I get this completely. I have one member of family who, whilst they are supportive of me in general, made a comment to another family member when they learned of my diagnosis. They said to put someone with issues like me in the same category as people who are non-verbal and so on, is an insult to those with severe needs. Basically, I think it's a lack of knowledge of ASD, a denial or lack of understanding of what I've dealt with my entire life, and a struggle with the idea that someone they were brought up with might have a disorder that nobody ever spotted. There is also the potential that they are in denial themselves about the fact they might not be neurotypical either. It hurts and I feel just as isolated now as I have my entire life. Not that I expected to get a diagnosis and for people to suddenly just get me or want to question me, I knew that wasn't likely for me. I do feel like it's a touchy subject and that if I bring it up it makes people uncomfortable. I only found out my diagnosis on Monday and I wouldn't say I've discussed it very much, so it can't be that I've bored them to death already.

Hello Leaflady4

I'd like to welcome you to the Online Community. So many people here will identify with what you have described and I hope it helps you to know you're not alone. 

As a starting point, you may find some of the information on the After diagnosis section of our website helpful. I hope that you also find connection and understanding from the wonderful and supportive people on this community.

Kind regards

Sharon Mod

Hello and welcome to the 'Latelings' club.

In answer to your question I think it comes down to knowledge and the lack of it. NTs do not know how to cope with an autist. Many have internal biases that manifest as lack of knowledge and disinterest because they can never truly understand what it is like to be you, so they change subject to something they feel more comfortable with.