[GJ] Great Post About ASD Diagnostic Process!

girljanitor:

realsocialskills:

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.

girljanitor said:

I’m so happy to see this post on my dash right now.

ALL of this is so good and important, but especially the bolded!!!! The most important part of any diagnostic process, whether entirely self-directed or with the help of a community, medical professionals or social workers, is the way you think about yourself and your own processes of living.

I think something that gets lost when people discuss diagnosis is that every diagnostic process is at least partially self-directed. If you don’t tell the doctor your symptoms, the process can’t get started anyways.

I agree that paper diagnosis could be an important tool for this student, because navigating college is difficult for everyone; doubly so for people with disabilities, and TRIPLY so for people with undiagnosed disabilities!!! Whether you decide to use self-help and community resources or to go through the diagnostic process with a psychiatrist or psychologist, understanding and exploring what kinds of changes could maximize your success and happiness will be very valuable.

As an addendum: I work in Disability Services at a college, and if anyone has any questions about what kind of accommodations are usually available and what kind of documentation is required to receive them, I’m always willing to answer them!