Do you have problems around the concept of being diagnosed?

Post Reply New Topic

This is a long one, I think, so I hope it isn’t too boring. I have a question, and I am curious about the answer.

It seems to me that there are two schools of thought on the subject of diagnosis as an adult. There are some (Temple Grandin, for example) that advise not to seek out a diagnosis unless one needs access to services or help. On the other hand, there are many personal narratives that speak of relief and liberation at the point of diagnosis: suddenly their friends and family ‘understood’ them, and, the individual was able to understand him/herself. It seems to me, that this latter scenario is the most prominent. However, based on a personal experience, I wonder if this is really the case, particularly in regards to other people.

[The short version (for those of you who scrolled down and didn’t like the length)]:



Did the event of diagnosis actually make your life worse? That is to say, did you find it harder to find employment because of the diagnosis? Did people treat you differently because, suddenly, you had a ‘thing’ even though you had not changed as a person?

[Long version (to illustrate my point)]:

A quick caveat here: I don’t have a diagnosis, have never sought out a diagnosis, and don’t think that I will ever seek out a diagnosis.

A while ago, I was getting to know a girl - and this is a rare event for me, usually I am not that interested in people, and even when I am, my inability to form or maintain relationships is severe - and for a long time she showered me with many compliments about how differently I thought to others, how she did not know other people like me, etcetera etcetera.

However, after having got to know me better and better, one day she said:



“Hey, can I ask you a question? I don’t want to offend you, though.”

“Go ahead and ask. It is very difficult to offend me.”

“Do you have mild autism or something? Or - what do you call it? - Asperger’s?”

“Haha, you’re not the first person to ask me that….”
“So, do you have it?”

“Look, I am aware - based on what people have told me, and on my own research - that I display a significant number of symptoms. However, I have never sought out a diagnosis.” (I score highly on the AQ test, too)
“Why?”

“Well, why bother? I can get a job, and I have a good education; I don’t have lots of friends, and haven’t had lots of relationships, but I am okay with that, so how I am doesn’t really prevent me from living how I want to live.”

And that was it, for a while. However, as time passed, this seemed to bother her. The end result was that all the things she previously liked about me simply became symptoms of this condition she was convinced that I had, and it was easy to divide her opinions into before and after.

Before: Wow, that is impressive that you have such a strong moral stance. You are a really moral person.
After: You just think that way, because that’s how autistic people are. You think in black and white and don’t understand nuance.

Before: I like how you don’t really need people to be happy.
After: You autistics (<—actual phrase!! !) just don’t understand how to socialise or be with people.

Before: It’s cool that you don’t care what other people think about you.
After: You’re just incapable of understanding somebody else’s point of view, because of autism.

And so on and so forth; you get the picture. My point is this: based on what I assume is a general pop-culture knowledge of ASD (as well as, admittedly, some personal experience) she had decided something. This had changed her entire perception of me; that which once was good, was now simply a symptom.

Now, of course, it is silly to say that I was diagnosed, because I wasn’t. Her entire premise was based on what she had heard/seen/read/personally experienced (“Yeah, well, I knew some autistic people before and you’re just like them”), and not on any kind of professional qualification or experience that would enable her to make such a judgement.

However, whether or not I had a diagnosis seems less relevant here. In one’s every day life, one does not deal simply with professionals, but with members of the public, ordinary people, like this girl in question. Many of these people will have had the same experiences with autistic spectrum disorders as this girl had - through media, through the internet, possibly through personal experience - and will have been absolutely free to make their own opinions, judgements, and connotations of such conditions and judge people accordingly. Such a scenario seems to me, to be loaded with problems simply because people are then free to put down everything you do to a condition, and miss you out (as an individual) completely. You are no longer an individual, but a condition, a diagnosis, a 'disease' even.

So, to restate my question in light of the above, for those of you who are diagnosed:

Did the diagnosis, at any point, cause more harm than good? Do you ever regret seeking out the diagnosis? Did it ever cause you to lose friends, and so on and so forth?

On the other hand, if anybody thinks they were liberated by the event, I would be like to hear about that too.

I think a formal diagnosis could only do me harm at this point. I think it would negatively impact future job prospects and relationships.

I'm on Temple Grandin's side on this.

I don't really see the harm, most of the time, in being diagnosed---unless it wrecks your budget.

If there are no benefits to being diagnosed, I don't see the use in going through the diagnostic process.

You pose some excellent questions, and a highly relevant scenario with the woman, that I have been grappling with a lot lately.

I was officially diagnosed in 2014 at age 29 after some years of speculation by self and others. However, I grew up thinking I was, for all intents and purposes, relatively normal (I did get a diagnosis of mild OCD as a teen). Did well academically, was a bit nerdy and shy...didn't start to suspect things until I got older and noticed how hard it was to maintain friendships, and how hard employment was despite a great academic record.

At first, I think the diagnosis helped. There was an underlying system, or logic, behind my employment and friendship struggles. I was referred to Voc Rehab, and I eventually got put in a job that was suitable for me, and at which the company was aware of my diagnosis and strengths/weaknesses. I did well at this job and left on good terms when I moved last year to a new apartment with my then-fiance (now husband).

However since moving last year -- other than one successful stint as a substitute teacher aide for a Kindergarten student who blossomed under my supervised "tutoring" -- I'm wondering if it would have been better, long-term, to have let it all be.

I notice people become uncomfortable now when I disclose; this led to a recent job firing, in fact. I've observed how people now debate whether or not it's ethical to say or do this or that in my presence because of my condition; it puts them ill at ease. I wonder if I'm truly safe by myself now out in the public -- am I adept enough at reading social cues to fend for myself?

None of these things were thoughts in my head when I was younger, even in my twenties.

I wonder, would I have achieved as much if I had been told I had this "thing" when I was younger? I wonder. Again, I was very successful academically; there wasn't a grade level where I didn't succeed. I graduated cum laude with a degree in English after starting college a year early. I have two partial Master's degrees. For having a condition that often paints people as being unable to think in more abstract terms, I was amazingly adept at breaking down classic literature, and creating well-defended theses on various research topics.

Nowadays, people don't view me as the successful academic. I'm this rather helpless creature.

And I think I'm now prone to viewing myself in the latter way, as well.

:/

What you describe is something I fear about diagnosis. I was told by mental health professionals in the past that I likely had ASD, but I resisted them officially diagnosing me because of fear of the stigma. People are treated differently when they have a label put on them. It shouldn't be the case but it is.

I know that I have struggles, but unless I end up in a state that I need special services, I am terrified of how having a diagnosis might effect future relationships and career opportunities. And, honestly, after researching, I'm just about 100% sure that I'm on the spectrum and I don't know that I need an official label to back it up because that alone has helped me understand myself better.

You don't *have* to tell anyone, that's what you're all missing. You can get a diagnosis and simply carry on exactly as before. It will only harm job prospects or relationships if you disclose. I got diagnosed and didn't even tell my own family.

I think for people having a diagnosis is best for their peace of mind and to help them understand why they've had so many problems with integrating into society or following societal norms. For me, I am working towards a diagnosis for my own peace of mind and to also better manage my issues/ get help for them.

Now I go to an autism center for therapy and med management. Before, I had non-specialists who had no idea what they were working with and were throwing every medication in the world at me, and I was getting nowhere. My wife was at the end of her rope and I hated myself. Nobody else needs to know, but there is no substitute, IMO, for having a diagnosis.

My DX got me out of a nasty situation at work, where the management was expecting me to do work that my autistic traits rendered virtually impossible. Without the DX I had no satisfactory explanation to give them, but with it they had little choice but to let me off the hook.

But AFAIK that's the only situation in which it's induced anybody into cutting me any slack. On the negative side, I've had no direct trouble from it but I'm aware of the way a lot of folks just think "Aspie = ret*d," which is why I don't talk about it much, except to folks who aren't that stupid.

I found that getting diagnosed really helped me and I am glad I got it. My life was hard before and it's hard now but at least now, I can put a lot of my challenges in proper perspective and realizing certain things are not my fault is so helpful. And understanding how Autism affects me is massively helpful. One of the biggest ways it helps is thst it allows me to protect myself and treat myself better and to teach others to treat me better.

And remember, whether anyone knows you are diagnosed is entirely up to you. You can get your own answers to your personal questions and never reveal your diagnosis to anyone else if you don't want to.

And I have to disgree with Temple on this point. I really respect her but I don't always agree with her. Services for adults who are high functioning are so scarce, few, far between, and practically nonexistent. So if your only reason to seek a diagnosis, if you are high functioning, is for help and services, you are in for a rude awakening and a massive painful letdown.

Overall no but as was pointed out, being open about having autism can also work against you.

I've only recently been officially diagnosed because I needed the safety net of the diagnosis. I was in danger of being unemployed and lacked the skills or experience typical for my age to be confident in finding a new job.

The diagnosis is helpful to validate why you are who you are and why you find some things to be much more difficult than the average person. In my case it also came with a surprise discovery, I also have moderate ADHD which I was unaware of but had built coping strategies into my life to compensate. Between the two, I was starting to really struggle with full time employment. For the last 10 years I have worked part time and felt much better overall.

I guess it comes down to how well you are coping in life, how long you can maintain those skills and the combination of issues you have.

I really enjoyed this thread and it has raised some very interesting points. As I result I felt called to share a little writing with you all from my latest little book:


Page 49

Autism as an Awakening

What you want to overcome you must first of all submit to.
Lao Tzu

In your autobiography, A Painful Gift, you brought out into the open the enormous struggle of living your life within the cloud of unknowing that you were on the  autism spectrum.

As the years passed you came to see that there really was nothing special about your own story. Many people just like yourself had reached middle age depressed, exhausted  and overwhelmed by unknowingly over-compensating and adapting to being on the autism spectrum.

It is quite ironic that what you regard as one of  your greatest achievements, your adaptive skills, became your  greatest impediment and barrier to being diagnosed and getting the help you so desperately needed. You simply became too convincing behind your persona of normality for the depth of struggle and heartbreak to reveal itself. It seemed that for every humiliation you received as a child, your mask of so-called normality became ever more fused to your being. However, what once served to protect you from abuse and humiliation was now constricting and crushing.

Being a spiritual guide has helped you to see that people all have defences and personas, and that they  wear them like garments of clothing. However, you have learned from your own experience that you can suffer a great deal when you become over-attached to the masks you wear, to the extent that you lose touch with who it is that is looking through the mask.

When the mask falls, so, too, can the sadness that gave birth to this protective layer. In tenderly holding this grief, a doorway can be found that will set you free.

Your experience of being diagnosed with highfunctioning autism was life-changing. It was like a moment of enlightenment whereby you felt as though you were given your humanity back. At first there was euphoria – the overwhelming joy of your struggle being seen and given its rightful name. ‘The beginning of wisdom is to call things by their proper name,’ said Confucius.

However, a deeper truth was soon to reveal itself that could not be so easily diagnosed or given a name to. This deeper truth was that you simply lost the person you believed yourself to be. This falling away of the concept you held of yourself after your diagnosis happened imperceptibly at first, until one day it just fell from you like a redundant skin. Into this drama came the question, ‘If I am not this self that has been constructed out of survival, then who am I?’ At the time you were bewildered and mystified as to what was happening to you. Being intimate with and integrating this experience took some time and skill. As a result a very new way of relating to yourself and the world began to unfold.

Today you can look back at your diagnosis with autism as a moment that changed your life in more ways than you could have possibly imagined at the time.

Very interesting and detailed responses; thanks, guys.