Diagnosis only goes so far

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. Diagnosis is an attempt to recognize the underlying reality (and often an attempt to get someone access to medical treatment or services.) But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. Being undiagnosed doesn’t necessarily mean you’re not disabled. It just means you haven’t been diagnosed with anything.

In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. Being undiagnosed and currently-undiagnosable doesn’t mean that you’re fake. It just means that you don’t have an answer.

Even when there is a diagnosis, there is not always an explanation. Some diagnostic categories are vague and unsatisfying. Some diagnoses amount to a list of symptoms you already knew you had. These kinds of diagnoses allow your doctor to bill your insurance and may get you access to treatment, but they don’t always give you answers. Being diagnosed with something vague doesn’t mean you’re fake either. It just means that you don’t have an answer.
In addition, diagnostic categories are often approximations that don’t quite describe reality for everyone. It’s fairly common to meet diagnostic criteria imperfectly. Or to have an atypical form of a condition. This doesn’t mean you’re fake either. It just means that reality is more complicated than textbooks. (Being similar to the textbook also doesn’t mean that you are fake; it just means that sometimes the textbooks are right about some people.)

Even when diagnosis gives you a lot of answers, it often won’t give you all the answers you would like to have. Mostly disabilities are fairly poorly understood. For most people, disability involves significant amounts of uncertainty, and many unanswered questions.

I don’t want to overstate this. Sometimes diagnosis does get you real answers. Even when it doesn’t, it can be very important. Often, even without answers, diagnosis can make your life a lot better by getting you access to treatment, support, or accommodations. Diagnosis can also mean that someone gets treatment or support that keeps them alive. Diagnosis is often very important for any number of reasons. It’s just not the ultimate decider of who is and isn’t really disabled. Disabled people who aren’t diagnosed with something that fully explains their symptoms are real disabled people, and their needs matter just as much as anyone else’s do.

Short version: Disabled people are disabled whether or not they are diagnosed. Diagnosis recognizes reality; it doesn’t create it. There are a lot of reasons why some disabled people aren’t diagnosed, or aren’t fully diagnosed. Scroll up for more explanation of why that is.

Self-diagnosed people

How do you feel about self-diagnosed autistics?
realsocialskills said:
I think that autistic people are autistic whether or not that they have been diagnosed.
I think people often know that they are autistic without a doctor telling them that they are. I have absolutely zero problems with someone thinking that they are autistic or wanting help. Even if it turns out that they are mistaken and not actually autistic. That happens sometimes, but I don’t think that’s hurting anyone, and I don’t think it’s a legitimate reason to object to self-diagnosis.
I think that people with disabilities need support, coping methods, and accommodations whether or not they’re diagnosed with anything.
I think we should move towards a world in which accessibility is seen as routine and normal rather than something people have to beg for access to. As it stands now, support resources for people with disabilities are often drastically limited. That is not the fault of people who identify their problems and support needs without medical diagnosis. Resources are scarce because our culture doesn’t value people with disabilities enough to make support readily available, or to routinely make accessibility and inclusion part of planning in schools, organizations, architecture, workplaces, or anywhere else. That’s the problem. Self-diagnosers who want help are not the problem.
There’s this notion that people with disabilities who need to do things differently are somehow trying to get away with something, and that they need to pass an extremely high bar to prove that they can’t help it. That attitude hurts all of us. Hating people who self-diagnose plays into that attitude, and it doesn’t help anyone.

When you’re without a diagnosis and not sure whether or not to describe yourself as disabled

I don’t really know how to say this the best way, but apparently I “might” have Aspergers. I had been having some trouble at college, and the woman we spoke to at disabilities services said that “clearly, something isn’t connecting here.”
But instead of getting me diagnosed or anything, everyone just kind of ignored it after that? The whole thing was really confusing. I don’t want to claim disability if I don’t have one, but I might have one, but I might not. I just don’t really know what to do
realsocialskills said:
That’s a hard place to be. It can be really hard when you think you might have a disability but you’re not sure. Especially when it’s a developmental disability and you are only starting to realize in adulthood that you might have it.
Several things I think help in this situation:
Take the problems you are having seriously:
  • You are having trouble, and that matters
  • You are not faking it
  • You are not being appropriative
  • It’s ok not to be sure exactly what’s going on
  • It’s important to take your needs seriously and to work on figuring out what would help
  • Keep in mind that whatever is going on, your needs matter
Whether or not you’re autistic, things written by and for autistic people might help you:
  • It’s ok to use them whether or not you’re autistic
  • The point is to do things that help you understand yourself and function well in the world, and that will involve learning from a lot of people
  • People with different kinds of disabilities and differences have substantially overlapping experiences, and it’s ok and important to learn from one another’s communities
  • One thing that might be particularly helpful is a guide the Autistic Self Advocacy Network made called Navigating College. It has a lot of really helpful practical suggestions
  • It’s probably a good idea to look at stuff written by and for people with other kinds of disabilities too (particularly ADHD, dyspraxia, dyslexia, and depression, but a surprising number of things end up being helpful to know about cross-disability)

It helps to identify specific things you’re having trouble with, for instance:

  • Are you having trouble reading?
  • Are you having trouble paying attention?
  • Do you get stuck trying to figure out what you should be doing?
  • Are you forgetting to eat?
  • Are you having sensory problems?
  • Is handwriting difficult for you?
  • Are you having trouble speaking, or processing speech quickly enough to participate in conversations?
  • Is it hard for you to navigate and get yourself to where you need to be?
  • Do you have problems planning projects?
  • Other things?

It’s helpful to identify the specific things you’re having trouble with, for several reasons:

  • There is a lot that people know about how to help with specific problems.
  • For instance, if reading is an issue for you, changing the font, using audio books, or using ebooks rather than print books might help.
  • Knowing a diagnostic label can be very helpful, especially in identifying people similar to you who might understand
  • But it’s even more important to figure out what you’re having trouble with in practical terms, and what can help
  • The tests doctors and specialists use to diagnose learning disabilities tend to paint a very broad brush, and they don’t necessarily give you great information on what exactly is going on or what would help
  • The more specific you can be about what’s going on, the more likely it is that people will be able to help you

If you’re in college, seeking formal evaluation and diagnosis is probably a good idea:

  • It is far easier to get schools to make accommodations if you have a diagnosis
  • There are a lot of fairly standard modifications that schools are used to making, but which they are generally only willing to make if a doctor recommends that they do so
  • And whether or not you disclose to individual professors is still your choice
  • There are downsides to diagnosis, but the advantages probably outweigh them in your situation

Don’t wait for diagnosis, though:

  • Diagnosis is a tool, not a solution
  • It can help you, but it won’t make things go away
  • There are problems you can solve now
  • And diagnosis is more helpful if you already know some things that would help you, because often doctors won’t think to put things in their report unless you suggest them
  • Working on living with a disability or even just a difference is a lifelong process.
  • And ultimately, you have to figure out for yourself how to manage that, and you shouldn’t wait for anyone’s permission

Don’t worry about being appropraitive or falsely claiming disability:

  • Whatever is going on, your problems are real and you should take them seriously
  • It’s ok to suspect that you might have an autism spectrum disorder and be wrong; that doesn’t hurt anyone
  • Figuring things out has to start somewhere, and it’s ok if you have to think through several possibilities to get the right words for yourself
  • The important thing is that you figure out what is going on and what can help you
  • That can be really difficult and scary, but it also makes life a lot better

Good luck. You’re in a scary place, but it’s possible to figure things out and get through this. You will be ok.