Self Dxers Who Don't Want a Diagnosis; Why Not?

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I wouldn't consider myself as self-diagnosed since I don't think of myself as autistic. However, I realise that I'm not entirely typical either and have certain traits that impact my life to certain degrees. I think that if I am then I'm either near but off the spectrum (BAP) or on the mild side.

My main issues are sensory-based. I could perhaps just be a highly-sensitive person. However, the extent of my sensitivities is a bit peculiar. Rather exhausting in fact. It's not uncommon for me to become so emotionally exhausted from an event with lots of stimulus that I end up breaking down in tears or lying on a cold floor for a while trying to recover. This can be difficult to explain to someone who has never experienced it. The worst part is the outbursts. If I overextend myself and try to stay in a situation despite being overwhelmed it usually backfires on me. Word of advice, this probably seems obvious but I wouldn't recommend trying to cook and socialise whilst you're overwhelmed. I did once and it did not go well. Ended up yelling at people and running away.

I can tell when I'm dangerously close to an outburst. Usually I remove myself from the situation when I feel one coming on but I pushed my luck that time. What exactly causes them I'm not fully sure. I feel an excess of stress from the fight or flight feelings I experience from an overwhelming situation and end up exploding if I don't let myself recover.

Here are some signs I've noticed when I'm on the verge of an outburst:

- A tendency to sit in the dark with limited sensory information.

- It feels like my brain is buzzing and swirling around.

-Pulling at my face and shifting my weight a lot.

- A detached feeling like I'm not quite in reality or in control of my judgements. It's a weary heavy sensation.

- Slower reactions in conversations and unclear / foggy thinking coupled with unexplained irritability.

For the most part though I cope fine. Which makes it stand out quite a bit when I'm not. I'm able to live independently as a university student and sustain friendships. However, miscommunications do occur and outbursts especially threaten the connections I make. If I'm not careful I can end up saying things I don't mean when I'm overwhelmed which is why recovery time is so important to let myself get back to normal before attempting conversation.

Although online tests have their flaws; out of the ones I have taken they usually place me either in the middle (between NT and ND), borderline or significant traits but not on the spectrum. I remember taking the aspie quiz and being slightly amused since my chart ended up looking like a cat. My results lent more toward the NT side overall but there were lines all over the place rather than purely being on one side or the other. In the interests category I was strongly more on the ND side but in communication I was a mixture of both but leaning more towards NT.

I don't see much benefit in pursing a diagnosis in my case. Since I'm someone who doesn't require support. I think that it would probably just unnecessarily complicate matters for me.

I talked about getting a diagnosis from a psychologist and explained my situation. He talked me through my reasoning of why I wanted it when I have a good job, can function well in public, and don't require any aid. It led me to reason that I only wanted it so I can prove to people close to me that I want to tell that they can't deny it. I don't believe that reason is worth all the money and time spent on getting a diagnosis, and also I shouldn't care if they believe me or not. That's why I'm sticking to being self-diagnosed for now, especially for, I feel, getting ripped off into already paying for an MRI and EEG.

I think the fact that some people have symptoms but have a good job , and function well in public , raises the question of when something should , or shouldn't , be seen as a disability .

It also makes me wonder why anyone would go down the route of being assessed in that situation .

I just see myself as different.

Intellectual curiosity, maybe?

Could be . I suppose it's like those online quizzes people do .

Personally I think that those situations aren't true autism, but could be BAP. One of the mandatory criteria for diagnosing any disability, including autism, is that it impacts your daily functioning, and you need the diagnosis to get at least some outside support. Without that need, you're right, autism wouldn't be a disability.

Then there goes something like me: the autism traits themselves are not really disabling but they make other mental health issues present differently and they make me react to mental health treatments differently than if I was NT with the same issues.

Jennifer O' Toole's Autism in Heels.

She got a diagnosis at 34 despite graduating from an Ivy League school and being a successful mom of three autistic kids.

Read chapter 1 on Amazon. She wanted to know that she wasn't a total failure at being human.

Ok so difference and disability...

One point to note is how supportive the environment is.

Give me a suitable secure job, affordable cost of living, secure accommodation, a predictable routine, reduced exposure to stressful situations, advocates, sunglasses and noise cancelling headphones and I reckon my functioning level could improve. Is it still a disability if accomodations can improve functioning by removing barriers?

People tend to forget how easily life can change, both for the benefit and to the detriment of the persons way of life.

@Amity . Good question . I guess many favouring the social model approach would say no . However while accommodations can help in some ways , and should be implemented , for many they're not a panacea .

So the excuses to not get an official diagnosis and remain only self-identified are primarily financial, with mistrust of appropriately trained and licensed mental-health professionals running a close second, and inconvenience and doubtful outcome tied for third.

The expense is understandable. For what I paid those university professors, I could have spent a rather pleasant weekend on the Las Vegas strip.

Does the lack of trust in professionals arise from people’s own certitude of their self-made ‘diagnoses’ coupled with the knowledge that those same professionals may have a differing opinion that may differ from the person’s own self-identification?

And what if the person can afford a second (or third, fourth, fifth, et cetera...) opinion, and all of those professional opinions disagree with the person’s own opinion while agreeing with each other’s?

In my own opinion, if you can afford a professional diagnosis, get one; just be prepared to have the professionals disagree with your own self-identification. If you can’t afford a professional diagnosis, just be satisfied that your own self-identification explains everything to you.

Good luck with that.

I was nervous when I got the letter with the assessment date . The thought "What if they say I'm not?" crossed my mind several times . I went, and I've got the dx, but I won't deny that I was really anxious and nervous going through the assessment process . I'm not a brave person . I can often go into avoidant mode .

You are a very very courageous person. That's why you survived all that you did. And even if you weren't diagnosed, you would be the same person that you are today.

That's a good point . A label describes a part of us , not the whole of us .

If I spent $1500 on an official diagnoses in 2010 instead of putting it a stock fund I'd have $5000 less in my retirement account. Having enough money to retire reduces stress when you are over 50.