u/CallToMuster

I (F24) was formally diagnosed last week with both autism and ADHD. I would consider myself "high-functioning" (I don't think that's the correct term anymore but I don't know the right one, someone please let me know) in the sense that I live independently and work a full-time job. I’m also physically disabled and use a wheelchair. It's hard, but in some ways even though it's such a challenge physically, living alone has allowed me to make my apartment such a safe space. Only my safe foods are allowed inside, I exclusively use colored soothing lights that make ripple waves on my ceiling, I can stim as much as I want, I only wear clothing that meets my sensory needs, etc.

Unfortunately, the rest of the world still exists and largely caters towards neurotypical people. I've spent a couple decades honing the perfect mask that has allowed me to be successful in life. I have developed scripts for EVERYTHING: talking to the grocery store clerk, having a meeting at work, warming up with teammates at wheelchair tennis practice, etc. Yes, it's like walking on a very high tightrope constantly, but I'm a really good tightrope walker! (This is a metaphor. My wheelchair and I would not be good on a tightrope.)

But I'm tired. I'm so tired. I don't want to have to constantly be monitoring my facial expressions and vocal tone. I don't want to have to hide my stims at work. I don't want to have to pretend like I'm neurotypical just to make myself more palatable for others. I want to be myself.

And yet... the undeniable truth is that if I do unmask, then my life will become a lot harder. I could get in trouble at work (I already get in trouble for not understanding unwritten expectations, so then I ask lots of clarifying questions, but was recently dinged for that too). If I lost my job, I could also lose my apartment and the safe space I’ve worked so hard to create.

So masking feels necessary for my survival. At the same time, maintaining it is painful and exhausting. I’m also having trouble unmasking even in situations where I genuinely want to, because the mask has become so automatic. It's like an automatic reflex and I can't stop it even though it hurts. How do you navigate these competing realities? How do you begin unmasking safely when masking is the very thing that has allowed you to move through the world successfully?

Basically what the title says. I’m a 24-year-old woman, and yesterday I was formally diagnosed with autism spectrum disorder and ADHD, inattentive type.

I’ve suspected that I might be autistic for around four years, but for several reasons, I never seriously considered pursuing a neuropsychological evaluation. Cost was one factor, but I also wasn’t confident I’d find a reputable psychologist with experience evaluating adult women. Most of the options I found were either online providers I worried might be diagnosis mills or in-person evaluators whose experience seemed limited to young boys.

Then my longtime therapist independently brought up the possibility that I might be neurodivergent. That prompted me to look again, and I found a highly reputable clinic near me. It’s staffed by psychologists who spent decades conducting neuropsychological evaluations in the local hospital system before opening their own practice. When I spoke with them, they said they had plenty of experience evaluating high-masking adults, so I tentatively booked an appointment.

I’m very glad I did. The evaluation was extremely thorough: a two-hour interview, three hours of in-person testing, and another hour of testing at home. My parents completed several extremely lengthy questionnaires, and I also recorded an interview with them about my developmental history, transcribed it, and gave it to the evaluator. Altogether, it felt comprehensive enough that I knew I could trust the results.

Yesterday, I received those results: autism spectrum disorder and ADHD.

(I was prepared for the autism diagnosis, not so much for the ADHD. But the psychologist walked me through the results in detail and pointed to a lot of evidence from the testing. And, well, she’s right.)

Now I’m sitting here wondering what I’m supposed to do with all this information. I’m formally diagnosed, which is something I honestly never thought would happen. Over the past few years, I’ve already learned to accommodate myself quite a bit. Since moving out and beginning to live and work independently, I’ve had much more control over my home environment, routines, and sensory needs. (Life is definitely a lot easier now than when I was younger and subject to the needs and desires of everyone else in my living space. Thank god.)

I feel validated and relieved, but also a little lost. For those who were diagnosed as adults: what did you do afterward? Did anything change for you in a practical sense? Were there resources, accommodations, or ways of processing the diagnosis that you found especially helpful?

Basically what the title says. I’m a 24-year-old woman, and yesterday I was formally diagnosed with autism spectrum disorder and ADHD, inattentive type.

I’ve suspected that I might be autistic for around four years, but for several reasons, I never seriously considered pursuing a neuropsychological evaluation. Cost was one factor, but I also wasn’t confident I’d find a reputable psychologist with experience evaluating adult women. Most of the options I found were either online providers I worried might be diagnosis mills or in-person evaluators whose experience seemed limited to young boys.

Then my longtime therapist independently brought up the possibility that I might be neurodivergent. That prompted me to look again, and I found a highly reputable clinic near me. It’s staffed by psychologists who spent decades conducting neuropsychological evaluations in the local hospital system before opening their own practice. When I spoke with them, they said they had plenty of experience evaluating high-masking adults, so I tentatively booked an appointment.

I’m very glad I did. The evaluation was extremely thorough: a two-hour interview, three hours of in-person testing, and another hour of testing at home. My parents completed several extremely lengthy questionnaires, and I also recorded an interview with them about my developmental history, transcribed it, and gave it to the evaluator. Altogether, it felt comprehensive enough that I knew I could trust the results.

Yesterday, I received those results: autism spectrum disorder and ADHD.

(I was prepared for the autism diagnosis, not so much for the ADHD. But the psychologist walked me through the results in detail and pointed to a lot of evidence from the testing. And, well, she’s right.)

Now I’m sitting here wondering what I’m supposed to do with all this information. I’m formally diagnosed, which is something I honestly never thought would happen. Over the past few years, I’ve already learned to accommodate myself quite a bit. Since moving out and beginning to live and work independently, I’ve had much more control over my home environment, routines, and sensory needs. (Life is definitely a lot easier now than when I was younger and subject to the needs and desires of everyone else in my living space. Thank god.)

I feel validated and relieved, but also a little lost. For those who were diagnosed as adults: what did you do afterward? Did anything change for you in a practical sense? Were there resources, accommodations, or ways of processing the diagnosis that you found especially helpful?

DESCRIPTION LISTING 450 BAJILLION EXAMPLES OF HOW THE PUNCHLINE IN MOST POSTS AND COMMENTS REVOLVES AROUND THE WORD SLUR

Well, I survived the first half of my autism evaluation today!

It was almost two hours long and was basically just talking the entire time. I ended up remembering SO many childhood stories and examples that never even made it into the 20-page document I had sent beforehand, which is honestly impressive considering how ridiculously long that document already was.

One thing I wasn’t expecting: I actually unmasked? I had told myself beforehand that I obviously wasn’t going to try to “act autistic”, but also wasn't going to try to “act normal.” I was just going to do whatever felt most comfortable and concentrate on actually giving answers and not focus on whatever I was doing with my hands or face or tone. Looking back, I think I made eye contact with the psychologist maybe a handful of times over the whole two hours. I stimmed with my fidget toy and my service dog’s ears for the entire session. My face was fully blank, and my voice was very monotone. A couple of times I caught myself thinking, “Oh, I’m not using the right tone of voice for a conversation,” so I’d consciously switch on my normal friendly 'I am having a conversation with a person' voice and facial expressions… and then about five seconds later I’d realize I’d completely dropped them because it took too much effort to keep it up.

I told the psychologist (and the graduate student observing the session) about so many things. How I collect books but don't read them, I just like lining them up on my shelf in particular orders. How I am entirely incapable of recognizing flirting, or flirting with others to the point where I have completely torpedoed any chance at having a girlfriend because I say things that are totally not appropriate for a romantic conversation and then only realize weeks/months later. How I would cry as a child when faced with any sort of surprise, even if it was a good surprise. How I kept trying to hang out with the teachers at recess as a young kid and had to be ushered away and told to play with the other children. How I would get bullied by other kids in school because I wouldn't recognize jokes/innuendos and would respond to them totally sincerely. Etc etc etc, like I said I literally have over 20 pages of memories that I shared. Anyway, the entire thing was basically like this over and over again:

>Psychologist: “So, what kinds of things are you interested in? What do you enjoy?”

>Me: “My service dog. She’s amazing.”

>Psychologist: “Yeah, she seems like a grea—”

>Me: “I have spreadsheets about her. A lot of them."

>Psychologist: "Oh!"

>[Psychologist and graduate student both immediately start typing furiously on their computers.]

The only thing I’m a little nervous about now is the parent questionnaires. My parents’ general opinion has always been that I am completely normal because I act just like my mom. My mom, who wears her clothes inside out to work because she can't stand seams or tags... I warned the evaluator that their responses might be skewed lol.

Overall, I think it went well. I’m completely exhausted, but I’m glad I finally did it. Next appointment in the evaluation is in six days.

Lately I have been seeing some autistic people say things like, “I wish I had a visible physical disability instead,” or, “I wish I were in a wheelchair, because then people would understand and accommodate me.”

As an autistic person myself, I definitely understand the feeling behind it. Autistic people are frequently dismissed, misunderstood, denied support, and expected to function without adequate accommodations. Having a disability that other people cannot see or do not understand can be incredibly isolating. So I get why it might seem appealing to instead have a disability that is very obvious and that you think would be more “respected” in society.

But as someone who is also a wheelchair user, I feel compelled to say that wheelchair users face serious difficulties too, just as autistic people do. Using a wheelchair does not mean people automatically believe you, understand you, or accommodate you. Wheelchair users deal with inaccessible buildings, bathrooms, transportation, housing, workplaces, and medical care. We may be excluded because of stairs, treated as helpless or unintelligent, spoken over, touched without permission, or unable to access basic parts of our communities. (Sound familiar?)

More importantly, the name or category of a disability does not tell you exactly how disabled someone is. The level of impairment, support needs, environment, access to care, and combination of conditions matter far more than whether a disability is classified as physical, developmental, visible, or invisible. Some wheelchair users live fully independent lives, and some wheelchair users need 24/7 care. Same with autism! This doesn’t mean that either person with lower support needs is not genuinely disabled. It simply means disability exists across a very broad spectrum even within the same diagnostic category.

There is also substantial overlap between autism and certain physical disabilities. My own physical disability (a genetic disorder) has autism as a common comorbidity. This is the same for things like cerebral palsy too. There are many people like me who are wheelchair users and autistic, and so when non-physically disabled autistic people say they would rather be in a wheelchair than have autism, it can sting a little, because for us they’re not two separate experiences.

You can say, “I wish people understood how disabling my autism can be.” You can say, “I wish my needs were taken more seriously.” You can say, “I wish I did not have to fight so hard for accommodations.”But please do not describe somebody else’s disability as the one you would rather have.

Autistic people and wheelchair users (and those who fall in both camps!) both face real barriers. The goal should not be to determine which kind of disability is worse. It should be to recognize each person’s actual needs and make sure they receive the support and access they deserve! 💜

Long story short: I've been considering autism for many years. Recently my therapist brought up on her own that she's pretty confident I have it, and recommended I get a formal evaluation. I did some digging and found a clinic in my area that says they are very practiced with working with high-masking adults for autism assessments, so I scheduled my assessment with them. It will be 4 hours split over two sessions a week apart, then a follow-up with results and a written report that comes a few weeks after that. I have a few questions about the assessment process:

1. Is it okay to bring a binder? I don't want to forget things, and over the years I've written up a lot of random childhood memories and traits that may or may not indicate autism. I really really like binders and spreadsheets and lists, it makes me feel calmer to have everything organized. But I don't want it to seem like I'm fishing for a diagnosis, I really want to have an objective assessment.
2. Should I try to unmask? For example, there are a ton of things I do to stim with my comfort objects at home. I stim with them basically every moment I'm out of the public eye, I'm even doing it right now as I type this. But when in public I do less obvious stims like tapping my toes inside my shoes or running my tongue over my teeth in a certain order. The only time that I stim with my comfort objects in public is when I'm traveling, as that makes me very anxious. Should I bring my comfort objects to my assessment to stim with? I don't want it to seem like I'm putting on an act and trying to "look" autistic.
3. Is it okay that my parents won't be there and probably won't be asked for input? Like I said, I have a lot of childhood memories that I've written down over the years as well as many quotes of various things that my parents have said later about my childhood. It's just hard asking my parents directly because I'm pretty confident my mom is also autistic so when I've asked her about these things, she's told me that there's no way I could have autism because she acts the exact same way. (Yes, Mom, I know you do...) My parents live 4.5 hours away and the assessment is during work hours so it's out of the question. Will this mess up the assessment?
4. My special interest -- my service dog -- will be at the assessment with me. I can already feel the urge to tell the psychologist everything about her, because she helps me so much and is so amazing and I love her so much! But this would be bad probably, because I have a tendency to not shut up and then interrupt people when they try to move on. How can I make sure to not info dump for too long so I don't ruin the assessment by not leaving enough time to talk about everything else?

Thank you everyone in advance for any answers you can provide, I really appreciate it.

I have around 5 broken spokes on each of my wheels. Specifically, they are Alber E-motion M25 power assist wheels. Now whenever I roll anywhere, the wheels wobble a ton and make my whole chair shake too. I’ve learned that using wheels with broken spokes is very bad, but I physically can’t use my normal non-powered wheels. I have upper body weakness and some severe injuries in my shoulders, which is why I got the power assist wheels in the first place. I can’t even roll around my own apartment in my standard wheels, let alone get myself to work. But the power wheels have a lot of broken spokes… is it okay to still use those?