Some people insist that people can’t “label” themselves without a diagnosis–whether it’s NVLD or Asperger’s or whatever else is out there. But here are a few things to consider:
1) Getting or not getting a diagnosis doesn’t make your issues disappear or appear. If you have NVLD or Asperger’s, you still have it whether or not you’re officially diagnosed with it. And you know your brain better than anybody else does.
2) We have a well-known autism center right here in town and connected to the hospital. The founder used to help NVLD students as well as autistic ones. But the cost of diagnosis is $4,500–if you’re a child. If you’re an adult, they won’t even evaluate you.
3) This article by Devon Price points out various problems people can encounter before and after getting a diagnosis: Seeking an Autism Diagnosis? Here’s Why You Might Want to Rethink That/ Know the costs — and the legal risks.
Very few insurance plans cover Autism assessments for adults at all, so most diagnosis-seekers will have to pay out of pocket.
…To this day, many Autism assessors won’t even see adults at all. Even those who do frequently rely on evaluation instruments that were developed for children.
…I hear from women who have been turned away from an Autism evaluation because “women aren’t Autistic” on a shockingly frequent basis. It’s not unusual for potentially Autistic people to be rejected from diagnosis for things like being “too polite,” wearing makeup, or having any friends.
…There is no therapeutic “treatment” for Autism, no way for Autistic traits to be reduced or “cured,” and most in our community consider the idea of curing Autism to be deeply dangerous anyway.
Autism is a benign, regularly occurring form of human difference that makes up a core part of a person’s identity. It’s not a defect. It’s not a disordered behavior a person can be trained out of. There is no removing “Autism” from a person. The only supposed therapeutic ‘treatment’ for Autism that does exist, Applied Behavioral Analysis Therapy (or ABA), was designed to train Autistic children to fake neuro-conforming behaviors. It does not reduce the Autistic child’s distress or loneliness. In fact, studies suggest undergoing ABA is mental and emotional torture.
…What we really need, then, is the acceptance and support necessary to live more freely as ourselves (which has been demonstrated to carry many psychological benefits).
[Note: I have said the same thing regarding various traits, such as NVLD, selective mutism, and introversion. Even before I knew anything about these traits, I resented being told that I had to change, rather than other people accepting me for the way I am. ABA is related to gay conversion therapy and should be viewed the same–along with attempts to punish/”change” the NVLDer or introvert.]
…An Autism Diagnosis Can Impede Your Gender Transition
…In many countries, it is impossible to immigrate and become a citizen if you are Autistic — or if you have an Autistic child.
…Diagnosed Autistics Can Lose Their Legal Autonomy
…An ableist person who does not respect you will not suddenly begin respecting you the moment a psychiatrist says you have a ‘disorder.’ If anything, a person who once doubted the existence of your disability will simply turn around and use your diagnosis to discredit your judgement once you have it.
…A diagnosis is not what makes a person Autistic. Autistics existed long before psychiatry decided there was something ‘wrong’ with us, and we will remain long after it ceases to do so. You get to decide for yourself if the label “Autistic” is useful to you, if it helps you understand yourself better, communicate who you are to others, and advocate for your specific boundaries and needs. Nearly all Autistic community spaces vocally support self-diagnosis, and consider inquiring into a person’s diagnosis status to be pointless and impolite.
…And various other things which are far too numerous too name. Note that at the end, the author does also list reasons TO get diagnosed, so he’s not just a Negative Nelly.
I know very well what it’s like to know you have something going on in your head–to have it reinforced repeatedly throughout your life through, say, traffic accidents, difficulty making proper judgment calls, people ghosting or mocking you, bullying, teachers complaining about your handwriting or your trouble understanding directions, getting lost, on and on. Yet you tell people you have a disorder, and they don’t believe you.
I see the traits and read message boards for people with NVLD and Asperger’s, and identify with a huge number of them. It explains everything I’ve ever gone through. On August 26, 2010, I took the autism spectrum quotient test and scored 33–which means “clinically significant levels of autistic traits.”
I envy young people with these disorders because they’re more likely to have been diagnosed early and have somebody helping them, so while they still struggle with many things, they seem to be doing much better than I ever did. When I was a kid and young adult, people just dismissed it all as a character flaw and yelled at you, putting you out in the world and expecting you to just figure things out. If you didn’t, you were called babyish or told to try harder. Now kids get IEPs and help dealing with social situations. They get a diagnosis early that tells them it’s not just them being weird, that there are others like them and it’s okay.
At the same time, it’s troubling to think of all the things people have bullied/criticized/abused me for doing, which research has proven all trace back to NVLD/Asperger’s. I want to go back in time and bop them on the head for being ableist and abusing somebody with autism. People reject or scold or mock or abuse me over and over again for traits I didn’t ask for and have no control over. Or they deny I have NVLD or Asperger’s, while complaining about the very traits that prove I have them!
I now know that my stint in counseling in college would’ve gone much better if either I or my counselor had known anything about learning disabilities. I was looking for an explanation of why people kept mistreating me yet I didn’t know how to stop it; she kept going on about things like meeting people and conquering shyness. It didn’t feel helpful at all, and then I ran out of free sessions.
It wasn’t helpful because my splenium is likely small, hindering communication between the left and right parts of the brain. If somebody can fix that, my issues will probably melt away! Maybe I would have an accurate view of where the traffic is. Maybe I would no longer have weird visual illusions that distort the angle of the road and make me almost run into someone. Maybe I would know what to do in a split-second crisis, or stop getting lost inside a building. Maybe I would read people properly and know when and how to enter a conversation. Maybe I would know if someone is manipulating me. Conquering shyness does nothing to help that.
So I know what this is like, along with what it’s like to have people dismiss what you know very well is true, simply because some professional has not diagnosed you. But these disorders existed long before diagnoses ever did. And as I have discovered, getting that diagnosis is a lot harder for adults. NVLD still isn’t in the DSM–though it used to be, and there are talks of putting it back in with a changed label to make it more accurate. (Nonverbal doesn’t mean we can’t speak!) And both that and autism can be prohibitively expensive to diagnose. There is no medication for NVLD and research, I’m told, has stalled. Treatments can be expensive as well, and since it isn’t in the DSM, it’s not covered by the Individuals with Disabilities Education Act.
I’m currently going through depression from a combination of 1) PTSD after many years of divisive politics, leading to increasing withdrawal from social situations; and 2) finding out I’ve been blocked online by somebody I considered a friend. This is not the first time I’ve been ghosted by someone without a disagreement, an argument, an explanation, or even a word. I have no idea they even have a problem with me, and suddenly they’re gone. And this person–the story I got through a third party turned out not to be true. I only ghost people who are bullies or bigots, I’m not a bully, and do my best not to be a bigot. So being ghosted by someone I never argue with–I don’t understand it at all. One person I knew in real life ghosted me several times, the last time a few years ago. I still have no idea why she ghosted me any of those times.
As for the online friend, the initial ghosting and blocking was a while ago. I had sent an apology through that third party, since she had blocked me. Then I found out the story I got wasn’t true, so I don’t even know why she blocked me the first time, or why she unblocked me but then blocked me again after I sent a friend request. We had never argued or disagreed about anything! I had stuck up for her and helped her! I found out about the second block this past week, since it had been such a long time since I sent the request. This drove me into a deep funk, where everything that ever went wrong for me socially began replaying in my mind.
Many years ago, I stopped going to SCA events because it felt like every time, somebody would start badmouthing my faith, when they weren’t telling me to talk more or to smile. Nowadays, it seems like every time I go to a social event, including church, somebody starts ranting about trans kids, or liberals, or CRT, or people taking sensible COVID precautions, or being called racist (when they’ve just been spouting racist crap). I wonder if this is what it was like for Southerners against slavery in the 1850s, Southerners against Jim Crow in the 1950s, friends of Jews in Nazi Germany….Did they find most people around them to be intolerable? Did they feel like fake allies if they didn’t leave their support systems? Were they afraid to speak out? Did they leave their churches or best friends or families?
This is not the church I signed up for. This is not what the social events used to be like. It hurts to go to these places–trauma and PTSD–so I’ve started withdrawing because of it, just as I did with the SCA. Withdrawing is also because it feels like I shouldn’t associate with people who do this. But what about the people in your immediate family? I’ve had to unfriend people on Facebook who I still see in real life at group events; that one’s especially tough. You hope they don’t mention it. And–just like post-SCA–it’s made me feel lonely and depressed.
When you have issues making friends, and these are your family/support system, you feel like you either have to stay with them or be alone.
Meanwhile you may lose sight of the good friends you still have who have stuck with you and are not fanatics, along with new friends who are kindred spirits. You may forget that, for example, one of the people in that group which your husband separated from–thereby shrinking your own circle–was a child abuser who popped her kid’s mouth for using her own bad words and laughed about pulling his ears. Or that friend who ghosted you without ever explaining why, if that’s how they treat you, then maybe you’re better off.
So I thought, “I’ve gotta go to the local autism center for help”–only to find out they won’t evaluate me because I’m 49 years old. Their online resources are geared toward kids.
So I turned to the Net and found one place in Mequon which evaluates adults for both autism and NVLD–but according to my insurance company’s online tool, they appear to be out of network. So I’d be stuck paying at least $2000 out of pocket. Rough estimate given on the website for the Mequon center: $210/hour for 14 hours is almost $3,000. Ow. Really don’t need that charge on our credit card. Found another place in Madison which evaluates adults and looks awesome (all the doctors are women)–but states right on their site that they’re not in network, so I’d be paying the entire cost myself. The quote is $3,000-$3,500. ARGH
Our insurer may pay for ABA (that torture treatment mentioned above) and other autism treatments, but won’t pay for neuropsych testing that’s not “medically necessary.”
So getting officially diagnosed may be completely out of reach for a lot of people. We shouldn’t be bullied and disbelieved by ableists just because we can’t get a diagnosis. We know our own brain better than anybody else does.