Being Without a Diagnosis

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So this is something that has been on my mind for a while.

Aside from a "preliminary" diagnosis that did not involve any testing, my autism is entirely self-diagnosed. I've mostly made my peace with the fact that, due to a lack of financial means on my part, it will probably always stay that way.

Sometimes though, I find myself wondering about this whole official diagnosis thing. I wonder... do folks who have autism have any sort of "right" to a diagnosis? Or is a diagnosis a privilege for those who can afford it?

I ask this because I'm sure many of us know that a diagnosis comes with certain advantages in the world. Accommodations and that sort of thing. Being able to say that there is an explanation for being the way you are. I guess that I feel like because I don't have an official diagnosis, that as far as the world is concerned, I'm basically just weird with no explanation (or maybe because of poor character).

Just some thoughts and feelings that I deal with from time to time!

I don't know the answer. I am awaiting assessment. I do not know if there will be anything different after diagnosis. I do not know what the outcome will be. They are all unknowns.

Welcome to WP, Dreamtastic.

You raise a good point, which is unfortunate for many adults on the spectrum.

I paid for a private assessment but agree that it's unfair, and developmental disabilities should be tested for free. It's especially upsetting when the person has a history of challenges or other diagnoses, or when they already have a "preliminary diagnosis" or referral from someone knowledgeable about autism.

Sadly there are people on this forum who live in countries which won't test adults, even if they can pay.

I wish I had an answer.

Does getting a formal diagnosis open any doors for you, in the US? Or does it just increase your options for spending huge amounts of money on possibly spurious healthcare?

To be honest if you are happy and coping ok I'd stick to books and online research. But try to adopt some of the longer term coping advice and get into good habits while you are young.

I've had to fight for 20 years for a diagnosis. A lot of the habits I got into over the years - while I didn't really know what I was doing - have ultimately done more harm than good and will be hard to undo, so be wise to that risk.

A diagnosis is a conclusion that is based on observation and expertise. Nobody has a "right" to a clinician coming to a particular conclusion because the evidence determines the conclusion. Maybe you mean a "right" to an evaluation?

But even if we swap "evaluation" for "diagnosis," this is kind of a meaningless question because we have no way of knowing who "folks who have autism" are until they get diagnosed with autism...and if they are already diagnosed, it's kind of pointless to have an opinion about whether they have a right to an evaluation.


No because not everyone who has a diagnosis had to pay for it.

If by "advantage" you mean "benefit," yes, I agree.

If by "advantage" you mean "better opportunity," that is not true in all cases. Some people get into special education with their diagnosis...that certainly does not give them an advantage over people who can manage school without special ed.


That is possible without an autism diagnosis. Saying that someone has unusually sensitive sensory perception is an explanation. Saying that someone feels more comfortable and less scatterbrained doing the same thing everyday is an explanation. Saying that someone can't focus on what people are saying while looking them in the eye is an explanation.

A diagnosis isn't the only possible kind of explanation...actually, it's not the best explanation at all because it doesn't say anything about why people have the symptoms they have. All the autism diagnosis implies is that someone has a similar pattern of behavior and cognition to autistic people.


Most of the people in the world (or just the people you come into contact with) wouldn't know anything about you having an autism diagnosis even if you did have one, so the situation would mostly be the same if you had a diagnosis: they wouldn't know of any explanation for how you are.

I hope that goes well for you, Mountain Goat! I like to think that there is more in life that we don't know than what we do know, but figuring things out the best that we can is all part of the journey.



Thanks, IsabellaLinton!

I think that diagnosis for children has improved a great deal (though it sounds like girls still aren't diagnosed quite as often), but for adults who grew up before today's times, it's definitely pretty unfortunate.

I do have other diagnoses and have had my fair share of challenges, but I guess I function okay for the most part. Still, I know that I force myself to be stronger than I really want to be, and there are times I feel like a diagnosis would be helpful. Free testing would be amazing!

I did not know that in some countries even adults for whom finances are not an issue cannot get testing. I guess everything is relative, and that for autistic folks who live in my country, getting a diagnosis might not be so hard after all. Thanks for pointing that out!




To be honest, a diagnosis probably wouldn't do that much for me. I have lived independently most of my adult life, and I have also worked since I graduated from college. Most people in real life would never be able to guess that I have autism unless I told them. However, people can definitely tell that I'm "different" and that there is something a little "off" about me. So I guess it would just be a way to officially explain what it is that's different about me.

I'm sorry that getting a diagnosis has been such a struggle for you, too. High-functioning autism is still very poorly understood compared to other levels of autism, and we really need more clinicians who are trained in how to recognize it.

I've definitely made a number of poor decisions over the course of my life that I am still working to fix the best I can. It's not always easy, but I like to believe that we all have the opportunity to change things for the better, no matter how entrenched we might be in bad circumstances. I hope that you are able to start your life going in the direction you want it to!



I guess that maybe a right to an evaluation might be a better way to put it. But there is a part of me that still thinks that if someone actually does have autism, they should have the right to a diagnosis as well.

I wonder... does one have to be a clinician to diagnose one's own autism? Do you think it's possible for someone, after a great deal of research over a long period of time, to correctly determine that he or she has autism?

You're right, people who know me only in passing or otherwise not very well would still not know about my diagnosis even if I did have one. But I'm thinking more in terms of employers and other non-family and non-friend people I interact with on a regular basis.

Even without a formal diagnosis, you are free to disclose your individual needs to people / employers.

You can say "I work best with (type of environment)", or "I have difficulty with (groups, touch, sensory, etc)."

Your employer should accommodate your needs. As far as I know that's a law in America because your individual needs should be met, whether you have a diagnosis or not. The same goes for friendships. You can say "I like a lot of routine and don't do well with surprises (etc)", and your friends should be receptive.

I understand wanting the DX but even without it, you shouldn't be very limited.

A diagnosis may not be the best way to get accommodations for autism.
It may be better to ask what you need. It is a waste of time and effort for a boss to research autism and try and guess what you need. Unless you just happen to be like Rain Man or that Sheldon character on Big Bang Theory. Nor do I think that sharing a full diagnostic report is a good idea.

I'd go ahead and claim the label if it fits. Most people won't check your references, and if they do, you can give the formal name of any tests you have taken, making it sound like an accredited agency as much as possible.

I believe that free evaluations for IDD and mental health ought to be a right and that people deserve access to accommodations, the same way I believe universal healthcare for physical conditions ought to be a right. If this were the case, I may well have gotten diagnosed in childhood when my parents first thought I had autism. They chose not to have me evaluated because of the cost, and I feel that decision was to my long-lasting detriment.

Accommodations aren't meant to be an advantage, they are supposed to level the playing field for those who start out at a disadvantage. Gaining access to them shouldn't be about who has the most money, but about who needs them, period.

Well, at the moment, I am actually a freelancer. Most folks would probably call me a "gig worker." So, I don't have an employer in the traditional sense. But I don't plan on doing what I'm doing now for the rest of my life. However, my autism has made it difficult for me to get traditional jobs in the past. Most folks say that I sound pretty good in writing, but when it comes to the interview, everything suddenly falls apart. I think it's just my extreme social awkwardness.

Even when I have had jobs, my autism has a tendency to get me into trouble. I have facial recognition issues (which I've heard can be due to autism), and this got me into trouble when I worked at a bank because I was often unable to recognize the regular customers.

It also got me in trouble multiple times when I was a substitute teacher. Such as the time when a principal told me what basically amounted to, "you can do it that way if you want, but I don't really think you should." I took her words literally and thought she was actually telling me it was okay to do it my way if I wanted to. But it seems like most neurotypical folks would have understood that what she was actually saying was, "I'm just saying this first part to be nice, but you really need to do what I'm telling you."

The facial recognition issues also struck at this job - a student doing something as simple as putting on or taking off a coat could make me have no idea who I was looking at. And good luck with getting me to recognize my class in a crowded lunchroom or playground! I also often didn't recognize other teachers I had met earlier in the day, which led to some awkward situations.

I'm not a lawyer, but my understanding is that in the United States, one is legally entitled to special accommodations in the workplace only with an official disability diagnosis. But I'm sure there are plenty of employers out there who are decent people and don't need the law to tell them to make things more pleasant for their employees.



No, I don't think I'm too much like Sheldon... except doesn't he have a schedule for what foods he eats on what days, just like I do? I don't know, it's been a while since I've watched the show. I'm definitely nowhere near as smart or scientific as he is.

You make an excellent point that sharing a diagnosis isn't always a good idea. I can see that there might be situations where it would do more harm than good.



Excellent point! You said it much better than I did.