Tag: autism diagnosis

Self-diagnosed people

Real Social Skills
A reader asked:
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.

You can’t appropriate your own mind

Real Social Skills
A reader asked:
I briefly self diagnosed as autistic, but I met with my psychiatrist yesterday and she told me since I noticed social deficits and tried to compensate, and managed just like a neurotypical person, it was just social anxiety bc if I were autistic, I wouldn’t have noticed or been able to learn so well. she didn’t mention the cognitive things I brought up, so I’m guessing they were normal /insignificant. How do apologize on my tumblr for fucking this up and appropriating?
realsocialskills said:
You don’t owe anyone an apology. Anyone in our community who has suggested that sincere but mistaken self-diagnosis is appropriation owes *you* an apology.
Thinking you’re autistic and being wrong is not appropriation. We all make guesses about ourselves; some turn out to be right and some turn out to be wrong. Thinking you’re autistic and being wrong is not appropriative and it is not fucking up.
That said, from what you described, it’s not even clear to me that you are wrong about being autistic. I’m not a diagnostician and I don’t know you, so I can’t say one way or another. But it sounds to me that your psychiatrist is basing their response to you on stereotypes rather than professional knowledge of autism.
Not all psychiatrists are competent to evaluate autism, particularly in adults. Psychiatrists are primarily trained in mental health; autism is a developmental disability. Mental health training does not imply expertise in developmental disability. It’s entirely possible that your psychiatrist is disregarding your cognitive issues not because they are normal, but because your cognitive issues are outside their area of professional competence.
Most autistic people notice social deficits and try to compensate. Most autistic people generate effecting coping strategies for a lot of things, including social situations. All autistic people can do some things that neurotypical people can do. Being able to notice and compensate for problems does not mean you’re neurotypical.
It’s fairly common for people who think they’re autistic to be told by mental health professionals that if they’re self-aware enough to ask, they can’t possibly be autistic. Or that if they can do anything at all, it must mean they’re not autistic. Those are perceptions based on stereotypes, not accurate understandings of autism. People with advanced mental health training are just as prone to a stereotypical view of developmental disability as anyone else.
If your doctor is responding to your concerns in a way that might be based on stereotypes and misinformation, it’s probably a good idea to find someone else (perhaps a neuropsychologist) who has a better understanding of autism and is familiar with adult diagnosis.
You may or may not be autistic, but it sounds like you could benefit from investigating further. And ultimately, the opinion that matters most is your own. You know your own mind better than anyone else does.
And whatever conclusion you or any professional ends up reaching, you have done nothing wrong or appropriative. It’s ok, and important, to try to understand yourself and figure out what you need to make your life work.

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

Real Social Skills
A reader asked:
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.