autism diagnosis

Point of autism testing?

Anonymous asked:

What’s the advantage of getting formally tested for Autism? My Psychologist pretty much just offhand diagnosed me with Aspergers, though I’ve know I had AS for longer than that. Anyway, since my family and I already know, is there any reason I should formally test for it?

realsocialskills said:

I can’t tell you whether it’s a good idea for you or not.

There are several reasons that I think it may be worth considering.

One is that external validation might matter to you more than you think it does. I knew I was autistic before I was diagnosed; diagnosis still mattered to me a lot more than I expected it to matter.

One way is that it can matter is in your relationships with other people. If you want to talk about being autistic, being professionally diagnosed is likely to be helpful. That definitely made a big difference for me.

Another way that autism testing can be helpful is that it can involve testing for other things as well. That’s worthwhile partly because it’s possible that another diagnosis fits you better than autism (that happens sometimes), and also because it’s not at all uncommon for autistic people to have additional cognitive or physical issues.

Testing can give you information about cognitive and neurological strengths and weaknesses beyond a one-line diagnosis. It can also tell you about other conditions you might have. For instance, testing can sometimes tell you:

  • If you also have ADHD
  • If you’re having motor skills problems, and what kind
  • Whether your memory is typical
  • Whether you’re having reading comprehension problems
  • And various other things potentially worth knowing

All of that can be overlooked if you’re doing ok in school or if people are already attributing everything to one diagnosis. It’s good to know where you stand and what your cognitive strengths and weaknesses are. Testing isn’t always helpful for that kind of thing, but it definitely can be sometimes.

Testing can help you to get accommodations. For instance, if you have difficulty with handwriting and your testing documents that, it can get you the legal right to use a computer for writing tasks and tests in school and university. That applies to a lot of other things too. If there are supports or accommodations that you need and aren’t getting, testing might help you to get them.

This is also true if you’re in high school now and planning to go to college soon, even if all your support needs are being met in high school without documentation. You can’t assume that will continue to be the case in college without documentation – they may well require it, and it will be easier to get what you need if you already have proof.

One thing to consider if you are under 18 (or even under 21), is that diagnosis is often taken more seriously if you were diagnosed as a minor. This can affect access to services and support if you turn out to need help later in life. (It won’t necessarily make you eligible for help even if you really need it, but it does make it somewhat more likely.) 

Formal diagnosis also can sometimes open up the possibility of trying psychiatric medication to manage some symptoms. This can also be a downside to diagnosis if it might mean that someone will make you take medication you don’t want to take. Some medication can be really helpful for some people; it can be a really bad idea for other people.

Another downside to consider is that having a diagnosis closes off some options and complicates others. For instance, autism, ADHD, and psychiatric conditions are disqualifying for US military service, even in noncombatant roles. Some other jobs or programs you might want to apply to might ask if you have any disabilities or mental health conditions (sometimes this is illegal; sometimes it isn’t). If you have a diagnosis, you will have to either lie or disclose. That can complicate some things. 

Another downside is that getting diagnosed with autism might result in people trying to make you go to behavior therapy or social skills groups. If you’re an adult, it will probably be reasonably easy to avoid doing this. If you’re a minor, people might be somewhat more likely to succeed in making you go to bad therapy. (Although that might happen anyway even without a diagnosis.)

It also might become harder to get doctors to take physical symptoms seriously. Sometimes diagnostic overshadowing means that everything gets attributed to autism even when it isn’t.

That said, I think all and all, the advantages to diagnosis outweigh the disadvantages for most people, particularly most younger people.

tl;dr Overall, I think that if you’re autistic or suspect you might be, pursuing formal diagnosis is usually a good idea. That said, it’s a very personal choice and your milage may vary. Scroll up for some reasoning.

adult autism diagnosis when you have learned to cover

Anonymous said to :

I’ve suspected that I was autistic for a long time, as has a parent of mine who has worked extensively with autistic kids, but I was in a severely under-diagnosed demographic, still am, and on top of that by necessity a lot of my more overtly autistic behaviors have been covered up, compensated for, or eliminated so I could get by.

I know I’m probably still autistic, I mean you can’t get rid of all of it and I know there are definitely things going on still, but I’m afraid they won’t believe me.

realsocialskills said:

They might not believe you. I’m not going to lie and tell you that you will definitely be believed.

That said, the current diagnostic criteria in the DSM-5 do account for this somewhat:

Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

Whether you’ll be believed is somewhat unpredictable, and a matter of luck. Not all doctors use the new criteria, and a lot of doctors believe things about autism that aren’t particularly related to the diagnostic standards.

(Eg: some doctors think that girls can’t be autistic, even though there have been diagnosed girls as long as the diagnosis has existed. Or that people who can talk, hold down a job, and have friends can’t be autistic. Or any number of other stereotypes).

I don’t know what to tell you about how to find a doctor who will take the new diagnostic standards seriously. They definitely exist, but I don’t know any reliable way to identify them.

If you have documentation of autistic traits in childhood, that is likely to be helpful. (Eg: school records, baby book, etc.)

tl;dr Adult autistic diagnosis in theory can take into account the fact that coping skills can mask symptoms. In practice, whether or not you find someone who will take that seriously is largely a matter of luck.

You're not taking anything away from autistics by suspecting that you're one of us

Anonymous said to realsocialskills:

I’m 22, queer, female, and I’ve been thinking for a while that I might have Aspergers. But I don’t know if people/doctors would believe me. And I’m also worried that they shouldn’t. It feels like the answer, like it provides a lot of those ‘oh that makes sense now’ kinda moments for me, but I’m also worried that I’m just trying to excuse my behavior by co-opting someone elses real struggle. Does that make sense? I’m probably just a horrible person and bugging you aren’t I? I’m sorry.

realsocialskills said:

I can’t tell you if you’re autistic or not, or whether your reasons for thinking you’re autistic are plausible. I have no way of evaluating that. Here’s what I do know:

There is nothing wrong with suspecting that you might be autistic (even if it turns out you’re not.) It’s ok to find autistic experiences relatable (even if you’re not autistic). It’s ok to find coping mechanisms or other strategies created by autistic people helpful (even if it turns out that you’re not autistic.)

There are a lot of people who find autistic experiences relatable, for all kinds of reasons. (There’s a lot of overlap between experiences related to autism, depression, trauma responses, being trans, being LGBTQ in general, ADHD, epilepsy, physical disability, social anxiety and any number of other things. And a lot of people have more than one thing.) Point being, if you’re seeing yourself in descriptions of autistic experiences, it’s fairly likely that there’s a good reason whether or not it turns out that you’re autistic.

Regarding making excuses: I think that understanding your abilities and limitations well is actually an important part of taking responsibility. If you have a sense of what you can and can’t do, and what support you need to do things, it becomes a lot easier to make responsible choices.

I don’t know if you’re autistic or not. If you think you have reason to suspect that you are, I think the responsible thing to do is to take the possibility seriously. Whether or not it turns out that autism is the explanation you’re looking for, I think that you will learn things about yourself that allow you to make better choices and take responsibility more effectively.

And while you’re investigating possible disabilities, I think it’s really important not to lose sight of the fact that you’re capable, and that your abilities matter too. One point of investigating disability is to figure out what your needs are, and to use that knowledge to figure out better and more effective ways of doing things. Acceptance is the opposite of giving up.

Regarding making excuses: Nothing you said gives me any reason to believe that you are making excuses; I’d guess that you are not. This section is to illustrate some what it looks like when people do make excuses. For instance, giving yourself license to be intentionally cruel would be making excuses. (For instance, by insulting people on purpose and saying you can’t help it because you’re autistic.) Learning to accept your needs and learning to be considerate of others would not be making excuses. (For example, by figuring out that you have a language disability that sometimes causes you to say unintentionally insulting things. And then learning how to effectively convey respect for people in ways that make it clear that you don’t mean your inadvertent insults.)

That said, even if you are making excuses, it doesn’t mean that you’re not autistic or that it’s wrong for you to want help. Making excuses is a human error; a lot of us (disabled or not) fall into it from time to time. You don’t have to wait to be perfect before it’s ok to try to understand yourself and get help; if you did, no one would meet that bar. You’re allowed to be a flawed human being; disability doesn’t come with a halo.

If you’re trying to get a realistic sense of what you can and can’t do, and what your needs are, that’s the opposite of making excuses. It’s actually crucially important for taking responsibility.

Also, I think it’s very common for people who grew up struggling in ways that went unrecognized to doubt that their experiences are real. I’ve felt that way, and I know a lot of other people who have too. Feeling shame and doubt isn’t evidence that you’re doing something awful; it’s a normal feeling that a lot of people have in this process.

tl;dr A lot of people who think they might be autistic feel a lot of shame and worry that they’re somehow harming others by suspecting this, or that they’re just making horrible excuses. That feeling is normal and common. If you have reason to think you’re autistic, investigating the possibility is a responsible thing to do. You’re not taking anything away from others. It’s ok to want to understand your struggles and figure out what your needs are. Scroll up for more thoughts.

neurodiversitysci:

on pursuing autism diagnosis

realsocialskills:

Who do I see first to get my diagnosis? My general med doctor will not agree to start testing, but will send me to any specialized doctor I ask about. Psychiatrist? Psychologist? Therapist?

realsocialskills said:

If you have the…

neurodiversitysci said:

Seconded.

Also, not everyone experienced in diagnosing learning disabilities and ADHD has training in diagnosing autism. The neuropsychologist who diagnosed me was a great example. They still believed circa 2009/2010 that Asperger’s and autism were different conditions, and weren’t aware that researchers had given up that idea.

I’ve also heard that it’s rare for clinicians to be trained in administering the test considered “gold standard” for diagnosis, the ADOS. (By “gold standard,” BTW, I’m referring to specificity, reliability, validity, etc., not respect or acceptance of disability. This is still medical model stuff). One can more easily find such people in large university or community hospitals, where demand is high and resources for training are plentiful. So, if you’re concerned about getting the highest-quality professional diagnosis possible, you may want to try to find someone with ADOS training.

On a side note: if the aspects of autism you’re most concerned about are sensory processing or motor coordination disabilities, you may also have to look farther afield than a neuropsychologist, perhaps even to an occupational therapist. As I learned through bitter experience, the basic neuropsych testing battery was developed to evaluate people with brain damage. In these sorts of situations, any sensory and motor difficulties will be relatively easy to see during testing, even with very blunt and indirect measures. Thus, the sensory and motor measures used are indirect (e.g., being able to remember what you hear during a working memory test, copy and recopy a picture after a delay, quickly scan through a map and cross items off of it). A few are direct, but IMO, aren’t very sensitive to more subtle difficulties (e.g., the Grooved Pegboard task). 

There are multiple neuropsych batteries that share a core of basic functions they test, but differ in which other abilities they assess. For example, my own testing was heavily weighted towards executive function tests but, oddly, did not include a measure of time sense, despite my real-life difficulties in this area and the existence of a neuropsychological time sense test. If there’s anything specific you’d especially like assessed, you may want to discuss that with the clinician before the evaluation so you’re not unpleasantly surprised.

Good luck! I hope you get a competent diagnosis and that it helps you.

realsocialskills said:

I don’t know enough about the ADOS to know the extent to which it is a valid test (it seems to be primarily focused on social interaction, so I have my doubts), but very much agree with the rest of this.

The one thing I do know about the ADOS is that the adult version and the children’s version are different and that experience with one doesn’t always imply experience with the other.

Ways autism testing can be triggering

nonbinarymollyringwald answered your question “Official autism diagnosis?”

Would it be possible for you to describe what particularily triggering aspects of these tests might be?

realsocialskills said:

There are several potentially triggering aspects of autism testing. Not everyone feels this way, but these are things some people experience:

The tone of the evaluation might be triggering in itself:

  • On Tumblr, looking for autistic attributes can be a positive or neutral thing
  • A lot of people here have a positive view of autism
  • And a matter-of-fact approach to autism-related difficulties
  • Autism testing is not like that
  • Autism testing is looking for flaws, and is based on the assumption that autistic traits are unfortunate and undesirable
  • That can be hard to deal with. It can be very unpleasant to demonstrate over and over that you have highly stigmatized attributes, especially if the person testing you doesn’t understand why the stigma is unjustified
  • It can help to keep in mind that there is a community of people who respect your brain just the way it is, and that acceptance is more powerful than medical stigma

Having to do stuff you’re bad at over and over while someone watches:

  • Autism testing aims to conclusively demonstrate that you’re bad at certain things
  • Given that autism is highly stigmatized, it’s likely that you’re insecure about at least some of the things you’re being tested for
  • You may be accustomed to trying to hide and cover for things you can’t do no matter how much people tell you that you should be able to
  • Testing involves showing the person evaluating you, over and over, that you can’t do certain things, or can’t do certain things in the ways expected for neurotypical people your age
  • That can be painful or frightening
  • It can help to remember that you can’t actually flunk a neuropsych evaluation
  • You’re ok, and doing things badly on neuropsych tests doesn’t mean that you’re bad or that you’re failing. It just means that you’re disabled in some way, and that’s ok.
  • It still might feel really, really bad. That’s not your fault, and you’ll be ok even if the testing is very upsetting

Some tests that you may have involve reading out loud:

  • You might take a vocabulary test that involves reading many words out loud
  • Some of them are words most people don’t know
  • So it’s likely that you will end up having to mispronounce a bunch of words
  • This can be upsetting or triggering if you’ve been made fun of for reading mistakes, (or if being good at reading is an important part of your identity)

No-win tests:

  • There are some tests in which it’s not possible to get every answer right
  • eg: There’s one test involving sorting cards in which they change the rules periodically to see how you react to changes
  • It can help to keep in mind that some of the tests might be intentionally messing with your perceptions, or otherwise intentionally confusing
  • It’s ok to be confused during testing. 

Not being understood or believed:

  • Some of the concepts used in autistic and developmental disability self-advocacy have not made it into the mental health and neurology professional communities
  • For instance, it is likely that the person evaluating you will not fully understand your explanation of why and how you stim, even if they know some things about the importance of stimming
  • They also might not understand or believe you about your communication, especially if it defies stereotypes
  • Eg: if you demonstrate a high verbal IQ, they might have trouble understanding if you say that you’re sometimes functionally nonverbal
  • eg: If you say that you understand metaphors and body language but have trouble with overly literal technical language, they might not understand that
  • The specifics vary a lot, but it’s likely that there will be *something* significant that they don’t understand or believe you about
  • Further, some things that have made it into professional knowledge, and even the diagnostic standards, are not necessarily common knowledge among all professionals
  • For instance, some psychiatrists believe that autistic people can’t have empathy, and will think that people who understand emotions can’t be autistic 
  • It helps to keep in mind that you don’t need the person evaluating you to fully understand, or even to be particularly insightful about autism
  • The main thing you can get from a diagnostician is a diagnosis, and documentation of your need for accommodation and/or services
  • Anything else is a bonus; good if you can get it, but not something to count on
  • Keep in mind that the person diagnosing you is not your only means of support, and that you can get help and insight elsewhere if you don’t get it from them

Bringing up childhood memories:

  • One requirement for autism diagnosis is that symptoms have to have been present in early childhood
  • This means that they will ask you about childhood
  • They might also ask to talk to your parents, or to see records related to childhood
  • This might be very painful to think about, especially if some of your earliest memories involve adults in your life thinking there was something very wrong with you and trying to change you
  • It also might be hard to discuss with family members, especially if they feel guilty or are defensive.
  • It can help to remember that you can’t actually flunk childhood, no matter how bad some of it was at the time
  • And that you’re not broken, and it wasn’t your fault if adults didn’t understand, and it wasn’t your fault if they hurt you
  • And that you’re not a child anymore, and that you will never have to be a little kid who adults are deeply concerned about ever again. 

Psychiatric screening:

  • You may have some kind of mental health testing
  • You will probably have a depression and anxiety screening
  • If your disability or health issues have been dismissed as depression/anxiety in the past, this might be frightening
  • It also might be hard if you’ve had bad experiences with therapy in the past
  • It can help to remember that this is probably not a primary part of the evaluation
  • It can also help to remember that, even if you have a mental health condition, psychiatric disability, or are crazy (including all three concepts because different people prefer different concepts for valid reasons), it doesn’t mean you’re not autistic. It’s possible, and common, to have both.

Social skills and empathy testing:

  • Some autism tests are supposed to test your ability to feel empathy, understand emotions, hear tones of voice, and understand body language
  • These tests are utterly ludicrous
  • Some of them are based on offensive stereotypes
  • One involves looking at pictures of actors with exaggerated facial expressions and saying which emotion you think they’re feeling. (They provide a list of seven.)
  • Taking ludicrous tests might feel degrading in itself, especially if you can’t answer the way they want you to
  • It might help to remember that these tests are not actually reliable indicators of your understanding of other people

Power

  • If you’re being tested for autism, it means that someone else will be deciding whether or not to diagnose you
  • This might also mean deciding whether you qualify for services you need
  • Or whether you qualify for legally-mandated accommodations you need
  • It can also affect how you see yourself, and how others see you
  • That’s a lot of power to put in someone else’s hands, especially if their understanding of autism is partial
  • That can be very scary, especially if you’ve had bad experiences with testing or gatekeeping in the past

These are the potentially triggering and painful aspects of autism testing that I know about. Does anyone want to weigh in about others?

more on autism testing

In reference to the post about testing…

I’m assuming you’re a teen or adult, so I would warn you that a lot of these tests are designed for children and might seem silly.

Some of them don’t have anything to do with autism and are fairly offensive - in addition to the ridiculous Simon Baron Cohen questions, I remember doing Rorschach ink blots and a theory of mind test.

Many of them, such as the fine motor things like picking up little pegs and putting them in a pegboard, are timed and can be stressful.

I personally found the experience to be traumatizing since it was a lot of tests designed to show that I wasn’t very good at specific skills and it was a full day of being asked questions and failing these tasks in an unfamiliar environment.

I was also trying very hard to seem as “normal” as possible (since that’s what I had spent all of my life doing). I was trying not to stim at all or stimming under the table or when the person examining me wasn’t paying attention, and it ended up hurting me in the long run because I was so anxious from hiding these behaviors that they needed to see to confirm my diagnosis.

Some of the tests and the experience overall were triggering and my mom picked me up in the afternoon, I was sitting in a corner crying, and it’s still very difficult to think about the experience. I don’t think everyone goes through this, it’s possible I had a bad tester or something. Even though they will note if you’re scripting or stimming or anything else, don’t try and hide it. Do whatever you need to do to express yourself and take care of yourself, and make sure you have a safe space for after the testing.

realsocialskills said:

Those are all really good points.

My experience wasn’t quite as bad, but it was very stressful and somewhat humiliating. The people testing me were nice to me and were respectful, but the tests still got to me some. It can be draining to have to spend all day showing what you can’t do over and over and over, especially if you have baggage about your inability to do those things. (Most of us have baggage about that to some degree or another, because the world is not kind to people who are unable to do socially expected things.)

If you feel bad after or during the tests, it’s not because there’s something wrong with you. It’s ok to be autistic; it’s ok to be different; it’s ok to be disabled. Going through tests designed by people who think that means there’s something wrong with you can be degrading and painful - but it can’t make them right. You’re ok; the people who design these awful tests are the ones who are doing things wrong.

Official autism diagnosis?

I’m going for am “official” autism diagnosis soon and I was wondering if you knew what to expect…

realsocialskills said:

I have some sense of things that might happen, but I can’t totally tell you what to expect. The diagnostic tests that doctors and psychologists use varies a lot from person to person. They also have a large range of different attitudes, and what they will think and what they will do is somewhat unpredictable.

Some things that are fairly standard:

They will probably interview you about your various attributes and impairments. They will probably ask about most, if not all of these things:

  • If you’re in school, they will probably ask you what you’re having trouble with
  • If you work and you’re not in school, they will probably ask what you’re having trouble with at work
  • They will probably also ask what you had trouble with at school as a child
  • Whether you have (or ever had) narrow intense special interests (and possibly what they are)
  • How old you were when you started talking (and other questions about developmental history. But they will almost certainly ask about speech specifically, since it used to be the difference between a diagnosis of Autistic Disorder and Asperger’s Syndrome)
  • Whether or not you have empathy and/or can understand how other people are feeling
  • Your ability to understand other people’s body language
  • Whether you have friends, and how hard or easy it is for you to make friends
  • Your motor skills
  • Your ability to tolerate noise
  • Your ability to hold still
  • Whether or not anyone’s ever suggested that you have a particular condition

They will probably want outside information about your development:

  • They will likely ask to talk to your parents (not all doctors insist on this, but most of them will probably ask)
  • If you have allies who knew you as a young child, it might be helpful to offer them as people for the diagnostician to talk to
  • If you have school records that document related issues, it’s useful to show them. They may or may not ask, but they will probably find them relevant if you offer (I had IEPs, speech therapy records, OT records, and records of the reasons that teachers referred me for various things as a child.)

If you’re already being treated by a doctor for a mental health or neurological problem, they may want to speak with the doctor you’re already seeing.

They will do various tests. The exact tests they do vary, but may include:

  • Questionnaires that screen for mental health issues (probably depression and anxiety)
  • This may include the MMPI-2, a very long yes/no test that screens for various things. (It has validity issues with people with disabilities - eg: it’s not great at distinguishing between preoccupation with ailments as a mental health symptom and as a result of actual illness, or between cognitive problems and mental illness)
  • Multiple choice questions about autism related things such as Simon Baron Cohen’s EQ/SQ (some if not all of which will be based at least partly on offensive stereotypes.)
  • Tests of your ability to understand body language and tones of voice (by listening to recordings and/or looking at pictures and identifying emotions)
  • The ADOS , an autism-specific test that is supposed to test your social abilities, among other things
  • IQ testing (which will involve things like testing your vocabulary, your ability to detect patterns in cards and pictures, your ability to remember stories, and a few other things)
  • ADHD testing or other attention-related tests
  • Memory testing
  • Motor skills testing (eg: picking up and placing pegs, connecting dots, copying a figure)

During all of the tests, including those not directly related to autism, they will probably observe other potentially relevant things, eg:

  • Whether you’re dressed in a way considered socially appropriate for someone your age
  • Your hygiene on the day you’re tested
  • Whether and how often you make eye contact
  • Whether or not you’re making the socially expected facial expressions (eg: my diagnostic reports says that I have reduced facial expressions)
  • Whether and how you’re stimming
  • Whether you’re doing anything else unusual (eg: if you bring a stuffed animal or sing songs or repeat scripts)

I don’t really know how to predict which tests they will use, how they will interpret the results, or how they will treat you.

Does anyone else want to weigh in? What do you know about autism diagnosis that might be useful to someone about to go through that process?

One of my friends keeps trying to “diagnose” me with autism, even though I’m almost 100% sure I don’t have autism. It’s getting really irritating. But I don’t know how to tell her to stop doing that without sounding like I think there’s something wrong with being autistic. Do you have any advice?
realsocialskills said:
 
I think there are several issues here:
Privacy:
  • There is nothing more private than your brain
  • You get to decide whether you’re interested in hearing someone’s perspective on your brain
  • You get to decide what you think
  • You get to decide which perspectives you want to keep hearing
  • It’s not ok for friends to keep making invasive personal comments after you’ve let them know that you want them to stop

Concerns about ableism:

  • I don’t know why your friend thinks you’re autistic and why you think you’re not
  • It’s possible that some of your reasons might be ableist. (I’m autistic, and ableism is part of the reason it took me so long to figure it out. A lot of my friends knew before I did.)
  • (It’s also possible that you’re entirely right to think that you’re not autistic.)
  • Even if some of your reasons are ableist, you’re still allowed to want your friend to stop trying to diagnose you
  • The possibility that you are being ableist doesn’t entitle others to make invasive personal comments about your brain
  • You don’t have to be perfect to be allowed to have boundaries about what aspects of your personal life you are and aren’t willing to discuss

Concerns about how you’ll be perceived if you ask your friend to knock it off:

  • I think the best way to assert this boundary is to do so without much explanation, eg:
  • “I don’t want to talk about this anymore.”
  • You don’t have to have a reason that sounds compelling to have the right to say no
  • And if you try to explain, it’s more likely to sound ableist whether or not it is.
  • Also, if you explain, you’re talking about it, which is exactly what you didn’t want to do in the first place
  • You don’t need your friend’s permission to think you’re not autistic
  • You don’t need your friend’s permission to decide that you don’t want to talk about this
  • Your friend should respect this boundary, even if they think you are wrong
  • Part of being a respectful friend means honoring boundaries about which personal things they do and don’t want to discuss
  • If your friend tries to insist on telling you that you’re autistic, it’s not evidence that you’re doing something wrong. It just means that they’re not respecting your boundary in this area.
  • There are no guarantees about how they will react, but it’s likely to go better if you assert your boundary in a matter-of-fact way without arguing about it

Good luck. I hope that you and your friend are able to work this out.

You can't appropriate your own mind

i briefly self dxed 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 an allistic person, it was just social anxiety bc if i were autistic, i wouldnt have noticed or been able to learn so well. she didnt mention the cognitive things i brought up so im 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.

15r14:

annekewrites:

realsocialskills:

I’m a high school student in America. Recently I was called in to talk to a psychologist because the adults at the school noticed I was having problems. I’ve known I was autistic for about two years now, so I was relieved to finally have a chance to get my diagnosis. But I’m scared — what does…

annekewrites said:

My first social work internship was mostly doing educational advocacy services for kids with disabilities.  Here’s what I know, with the disclaimer that I’m in upstate New York and the educational landscape is a bit weird in this state, so check your local info:

- There are two different laws that you might get accommodations under: the Individuals with Disabilities Education Act (IDEA), under which you might get an Individualized Education Plan, or IEP; and Section 504 of the Rehabilitation Act of 1973, under which you might get a “504 plan”.  Generally speaking, an IEP is more extensive than a 504 plan, and is what you need if you need something about the curriculum itself modified. 

- New York also used to offer something called an “IEP Diploma”, which was a high school diploma with extensively modified requirements.  This isn’t offered anymore for a number of reasons.  But even when it was, having an IEP didn’t necessarily mean that you’d get an IEP diploma; standard and even honors diplomas could still be an option.

- IEPs and 504 plans are confidential and off-limits to anyone except you, your parents or guardians if you’re under 18 (21 in some situations), and the teachers and other staff who are involved in creating or implementing the IEP or 504 plan.  Depending on what’s in the plan, putting it into effect may make it obvious to others that you have one, but not your diagnosis or the specific reason for the plan.

- This specifically means that colleges won’t know anything you don’t tell them. 

- However, if you do have high school accommodations, I strongly recommend you keep a record of them and when you’re in college you go directly to the college’s disability services office so that stuff is on file BEFORE any kind of problems happen.  Colleges don’t do IEPs as such, but they are covered under Section 504 so you can request “reasonable accommodations” related to a disability.  This applies to classroom as well as residential life.

- As a high school student, especially if this is your first go-around with services, you absolutely should have input into your IEP or 504 Plan.  You also have the right to bring an advocate of your choice into meetings, and sometimes it’s helpful if the advocate is an adult with similar disabilities to your own (I did a lot of this for kids with ADHD, because I’m an adult with ADHD).

- The school needs to accommodate anything you need to effectively participate in the meeting.  I worked with a girl who couldn’t physically go to her IEP meeting for mental health-related reasons, so we set things up so she could Skype in.  If you need to call/Skype/text to participate effectively, they need to be able to accommodate that.

- School districts can be lazy about all of these things.  They often want to put together an accommodation that is close to things they’ve done before even if it’s not really what you need, that is less expensive, that is less “trouble”, or that tries to make you or your parents look like the bad guys.  Don’t buy into it.  It’s their JOB to do what you need to get through school, and it’s the LAW.

15r14 said:

I had an IEP for my entire time in public school in North Carolina, from kindergarten to my senior year in high school— now I’m a sophomore in college.  My disability was vision-related, so it never showed up on my diploma (although if I had taken VI (visually impaired) tutoring classes at my school it would have)— I graduated with a full IB diploma and honors, and I have a friend whose story sounds more similar to yours who did as well.  

My experience with the system was really positive— a lot of that was because my parents were very involved from the very beginning, and really advocated for me (like the poster above mentioned, they often try to paint you as the bad guys).  It sounds like your school is suggesting this, not you/your parents/guardians, so maybe they’ll be less prone to doing stuff like that?  I dunno.  Something that was really tough for me was getting MY needs heard— especially if they were different from what I was “supposed” to need.  Also, in your IEP, you get a “goal” for the next semester, and often my personal goals weren’t the same ones my caseworkers and the administrators at the school wanted to put.  

The only reason a college will learn about this kind of thing is if you take special classes, you write your college admission essay about it, or maybe if you need accommodations on your application?  All universities have offices for students with disabilities, although once you’re in college you have to advocate for your own needs.  (At least, I’ve been to two, and I’ve had to do that at both.)  Everything annekewrites said above about self-advocating in college is exactly right, at least in my experience.  

Discriminating against you in apps is totally illegal, by the way (not that admissions officers aren’t often biased in the worst ways).  

And you were worried your classmates would know— the only time my classmates knew I had accommodations was when I either told them or when my exams were put in front of me (because large-print standardized tests are printed on 15x20 paper, often 50 pages long, and are so heavy you need two desks pushed together— but they were what I needed).  

In my four years of high school, my teachers always accommodated me and took my needs seriously.  You have a different situation, but I hope you have a similarly positive experience.  

EDIT: After you’re 16 it’s illegal to have an IEP meeting without you present (unless you sign a form giving them permission!)— and I know they invited to me to mine even in middle school! 

I’m a high school student in America. Recently I was called in to talk to a psychologist because the adults at the school noticed I was having problems. I’ve known I was autistic for about two years now, so I was relieved to finally have a chance to get my diagnosis. But I’m scared – what does this mean? What’s going to happen next? Will the colleges know? What is the psychologist going to tell people? (Some of the things I said are pretty private.) He said he might talk to me again – when?don’t know what’s going on. Will this go on my permanent record? If I do get diagnosed with autism, how is this diagnosis going to work? (Since I’m doing it through my school psychologist.) What tests do I have to take, and through whom? Sorry for dumping this all on you, but I’m really scared and confused.

realsocialskills said:

I’m not familiar enough with high school disability services to know good answers to all of this. Here’s what I do know:

Generally speaking, autism is diagnosed through a neuropsych evaluation. Some of the tests will be autism-specific, and some of them will not be. It takes several hours. They will want to know developmental history (ie: whether you appeared atypical/autistic in any way when you were a small child). They will probably want to talk to your parents and teachers. 

If you are diagnosed with something and the person evaluating you recommends accommodations, the school will have an IEP meeting with your parents to discuss a plan. Depending on the policies in your school district, you may or may not be included in the meeting. (At your age, it’s likely that you will be, especially if you insist).

It’s also possible that you might be referred for a lesser kind of evaluation, or for in-school services that do not require a diagnosis. For instance, if your school thinks that you have handwriting problems, you might be sent for a short occupational therapy evaluation. If your school thinks you have social skills problems, they might want to send you to a social skills group. 

Did you discuss autism specifically with your counselor? Do you know which kind of thing they are trying to refer you for?

Regarding college: I don’t know how much high schools share with colleges. 

The Autistic Self Advocacy Network made a guide called Navigating College that has a lot of good information about how college works for autistic people. A lot of it is applicable to high school as well, and it’s definitely relevant to high school students who are considering college.

Do any of y'all know more about how this works for high school students in the US?

[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!

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.