What if it's a misdiagnosis?

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Sorry, I know "diagnose me" type threads are a bit annoying. Also, sorry if this is long and full of run-ons and any funky grammar.

I saw a psychologist for a while hoping I could finally completely settle things and be totally sure, but I feel like I came out not really having accomplished that. I was diagnosed with ASD and inattentive ADHD, both of which I'd suspected, but I'm not 100% confident on either. I don't think the psychologist and I really understood each other sometimes, and in the end I almost felt like he just threw the autism diagnosis at me because he thought I wanted it and he wanted to be done, rather than because he'd fully reached the conclusion that I was autistic (although maybe I'm just worrying too much). The ADHD testing wasn't very thorough, and while I'd suspected I might have ADHD before, I don't really feel like incomplete testing necessarily confirmed it.


I feel like the 2 biggest possibilities are basically: my problem is really inattentive ADHD, with severe anxiety/social anxiety/depression, and it all comes out in a way where I can relate to autism but it isn't actually the cause, OR I'm actually autistic, and maybe I've got comorbid ADHD but it's probably just autism-related executive dysfunction issues, and I've got social anxiety/depression along with it, with a lot of that probably coming from living with undiagnosed autism. I'd also had a tiny suspicion of BPD for a while either way, but I think I was probably wrong with that.
I know a lot of people would say the specific label really doesn't matter that much, but I'm ridiculous and know I really will keep driving myself crazy. Plus, I feel like it affects how I could go about "treatment" (of course autism isn't technically treated I guess, but) or working on things.


I won't go into everything that makes me think I have autism right now, because it'd be too long, but some of the things related to my uncertainty between the 2:

-I'm not sure how much of my issues with social cues/nonverbal communication are actually social issues on a neurological level, and how much could be from inattention/focus issues and just constant anxiety making it hard to pay attention in social situations pretty much my whole life.* And then of course anxiety/depression/introversion having made me avoid social situations a lot in my life could add to it. I feel like I spent a lot of my life blaming my social issues (inability to make more than a few close friends, atrocious conversation skills, ect.) on social anxiety and depression, telling myself that surely some day I would get a hold on those things and they'd get better and boom, I'd be a social butterfly and totally capable if I could just put myself out there. But I'm thinking that's not really true, of course.

-When I read about masking, I related so much, and that was one of the first things that finally made it really hit me that maybe it was actually autism. I've read that for autistic people socializing is done cognitively rather than coming intuitively, and that is absolutely me. But in a way I'd always assumed the whole desperately watching other kids to know how to act/socialize when I was younger, trying to figure out the "right" thing to say, ect., came from low self esteem and being so anxious and uptight I couldn't possibly just be myself. I think that probably was just the only way I had of explaining or understanding it then. Still, I'm afraid I'm just skewing my perception somehow.

-I do sort of have sensory issues, but they're mild and they fluctuate. When I'm tired, anxious, or stressed they're worse, but for the most part I'm bothered by fluorescent lights or other bright lights or the sun (both the light and because heat or cold affect me strongly, too); mildly (but more than the average person) bothered by strong smells; and I feel like sounds can be louder to me than most people, can be too much or sometimes make me feel a building nervousness inside and freak out if I'm anxious or overwhelmed, but aren't usually actually painful. When I was a kid it was pretty much the same from what I can remember, but just a little worse with the lights or noises, and certain textured fabrics bothered me. With this sort of stuff, I'm not sure whether it's just some hypersensitivity from ADHD and anxiety, or more. I think sometimes I get hyposensitivity, too.

-I definitely have "narrow" interests, but honestly I always thought I was just a boring person/lacked interest in things because of depression. I'm pretty sure I have special interests, but not many are super intense and maybe some could even just be things I'm hyper-focused on?

*I actually read a blog post recently that said, "For autism, it's more of a brain-racing-a-mile-a-minute but... [ADHD and autism diverge because] the autistic brain is fairly well-focused...in fact, probably hyper-focused. Except that the topic of focus could be shifting rapidly and the (textbook) autistic brain is trying to keep up with itself. It's not that the autistic brain moves too slow-just the opposite; it moves too fast, faster than conversation can accommodate," and that sounds a lot like what I've experienced. I think that's another part of why I've had trouble even trying to judge how well I do in social situations. Until I tried a certain medication, I didn't even know what it was like being able to slow down thoughts and think straight during conversations without being entirely overwhelmed.


I don't think I'm trying to avoid accepting being autistic or having ADHD, unless it's on a subconscious level; at this point I just want to know for sure no matter what.

Has anyone ever been misdiagnosed, then found out later? I know this isn't enough info to know for sure, but does anyone have any advice on how to really know the difference?

I was officially diagnosed about 5 months ago, by a psychologist who hadn't talked to anyone but me. I went through similar to you, thinking maybe I just wanted the diagnosis and the psychologist gave it to me for that reason, and/or I exaggerated or unintentionally lied or who knows what? Also, like you I was wondering if I really had trouble in social skills and/or other areas, especially as I usually seem to get along with other people well.

It was only about last week that I actually fully accepted my diagnosis, and I'm sure now it's correct. Some things that helped me everytime I doubted it:

- the social worker who referred me to the psychologist for asd assessment came to the conclusion that I might be on the spectrum on her own
- during the diagnosis, I did not list any reason why I thought I had asd, but rather why I didn't
- since diagnosis, I've found out that I have family with asd, some diagnosed, some not but most likely are on the spectrum
- almost every single person I've told, including family and friends/some co-workers have told me "I'm not surprised" or "that explains a lot"
- the last person I told, last week she wrote me an email saying that she had already suspected, and listed a bunch of reasons why - all things that happened 10 years when we first met and were from a time when I had absolutely no clue or idea that I interacted with people differently at all, and had never heard of Aspergers or HFA, which basically ruled out any chance that I was "acting" in a way because I had heard about this thing and thought I had it.

There were obviously things that I was saying/doing/not doing that indicated ASD that I was completely unaware of (and probably are still even more that I am unaware of), and even though most people had not picked up on then and consciously labeled them as autism, they were there, and they were noticed.

So, to make a long story short, if you are doubting your diagnosis, look for clues in your life that confirm it.

How do others react when you tell them? Do they tell you anything about how you acted/behaved in your history, especially from BEFORE you suspected ASD? Do you have family members who have it, or that you highly suspect have it? Are there any other professionals specializing in asd that have suspected you have it?

If you are like me, it will take awhile for the self-doubt to go away, but if you have it, you will get confirmation of it in multiple areas of your life.

You could watch this forum and see if your experiences match that of other females on the spectrum. The expression of female and male autism is sufficiently different to result in a significant underdiagnosis of autism in females. And, you can see if any of the work arounds for autism work for you. For instance, most of us don't like crowds. We function better if the store or theater is empty.

Normal people don't post walls of text. Writing this concisely took years of practice.

Thank you both!

Thanks for sharing your experience, Keladry. See, I told the psych that I thought I was likely autistic and wanted to be evaluated, then after explaining a few reasons, went into it trying to be otherwise unbiased. Then most of it was so not the somewhat structured type testing that I expected (and was kind of a mess that felt like, whether I do or by chance don't have it, it wasn't going to "catch" it) that I think I was thrown off and it sort of turned into me unclearly trying to explain why I thought I was autistic. Out of the few people I've told, my mom didn't think it was true, a friend (who's on the spectrum) didn't really let on whether he agreed or disagreed but he didn't really seem surprised, and another sort of commented that she was a bit surprised but didn't say much else. I brought it up to a therapist who at least sort of agreed I should get tested, but I hadn't been seeing her long and was afraid it was just because she's only known me since after I started suspecting, so I might have subconsciously been "acting" more autistic (or actually masking less?) I do have family on the spectrum, one person diagnosed and a few I strongly suspect are.
I definitely see a lot of clues in my life, I'm just sort of afraid of the whole "when you're a hammer everything looks like a nail" sort of thing.


I do relate to some of the experiences of other women with autism I've heard/read, but I'm also just worried about the fact that it'd be possible that even just being someone who's socially awkward with severe anxiety could make me relate without technically being autistic. I'm definitely overthinking, but as silly as it might sound, it's sort of one of the reasons I really want to be totally sure about my diagnosis... I've considered going to support groups for women with autism, but I worry about the possibility I'd be invading a space I don't belong.

Thanks to both of you again.

Thanks for sharing more. So the psychologist who you talked with concerning autism - did she give you a diagnosis? If so (or even if not), what all did she have you do? Just talk/share your experiences? Or did she have you fill out forms - if so, what? Did she have you do any weird activities (ie. telling a story from a picture book)? Does she specialize in diagnosing autism or is she just a general psychologist?

I understand completely the not wanting to go to support groups - I felt the same way before being diagnosed and was completely against going until then as I didn't want to intrude, or "pretend I was someone I wasn't." Even though I wasn't going to go and say I was on the spectrum, only that I thought I might be, to me that felt like lying or being dishonest if it turned out I wasn't on it.

However, I do have to say, that, especially if it is a group for women on the spectrum, you would be very welcome at such a group, and they might be able to give you some help or guidance in trying to figure out if you are on the spectrum or not (ie. sharing resources and/or how they themselves were diagnosed).

It's possible to have autism, anxiety, social anxiety, and ADHD all together. You can try and get a second opinion and avoid any therapist who throws a label at you to get it over with than trying to find the root behind the symptoms. I call that being a lazy therapist.

I also often wonder if it's all just anxiety I am having even if I am not feeling anxious because my mom told me I just have anxiety and if my therapist I saw in high school was mistaking when he was telling me the aspie issues I have like with social and missing social cues. My mom has always said the opposite of what my therapist would tell me. While my mom would be on my side about how kids would treat me, the therapist seemed to justify their behavior by telling me I am not reading social cues and stuff.

I wonder what if it was just anxiety that was making me copy other kids and try and be normal because of self esteem issues and trying to figure out the rules.

But then the other part of me realizes even when I was calm, I still had social issues and kids still rejected me and I still figured stuff out wrong so what is my mom talking about?

I still have learning issues even when I am calm so it can't be academic anxiety that makes it hard for me to do my school work. I don't have math anxiety because I still had troubles understanding it without anxiety.

Also I wonder if I am having sensory issues because of anxiety or if it's sensory issues that is giving me anxiety.

I have all three diagnoses, autism, anxiety, and OCD. I was also diagnosed with ADD. I did try to go for a retesting but I got talked out of it and I also felt I had a lazy therapist I saw when I was 22. I feel she basically threw the autism label at me just to get it over with and wouldn't discuss it with me and said "I'm a professional so you have to trust me on this."

My husband tells me a doctor would not tell you things if they don't think its true because they are professionals and they know just by seeing you and what you say and how you act in their office. Yes me and my therapist in high school did talk about my childhood and I told him about my experience with my peers and and me being so naive and how I was oblivious and the misunderstandings I would have and he said it was due to AS and told me about the hidden curriculum people automatically see and everything had to be spelled out to me about the rules and how to act. But my mom will just say the opposite and say I was just innocent and I am not sure how she would react if she knew my therapist also said "oh that is because you have Asperger's" because she got mad when she found out my school counselor was doing that but the difference was my therapist was trying to help me improve while my school counselor as just giving me excuses and being my friend than a therapist to help me get better and his attitude was "Oh poor you, people don't understand you." Maybe that was why my mother was mad and fired him. But yet she has knowledge I do have symptoms and some of it but then she turns around and says I just have anxiety. It's like she can't make up her mind. Plus she has blamed my special interests on my anxiety and I felt fine when she was calling it anxiety and I wondered what am I having anxiety about, I feel fine. I was just speechless about that remark.

The psychologist ended up giving me a diagnosis of autism spectrum disorder and inattentive ADHD. For the first appointment, my mom went along with me and it was a basic interview and talking. Then he had me do a WISC IQ test over 2 appointments. We talked about the results and he said that the gap in my verbal and nonverbal IQ pointed toward the possibility of autism and/or ADHD, then I think it almost seemed like he wanted to leave it at that rather than actually following through to a diagnosis. He had me fill out an AQ test and have 2 other people fill one out for/about me, my score was over the line, one was above it, and the other was just below it. He gave me an ADHD test on paper and it was pretty long, but I didn't think it was quite long enough for a diagnosis, but I don't know. He said I had inattentive ADHD, then we had a few seemingly directionless appointments just talking. I brought in an unofficial checklist of female/atypical autism traits and marked the ones which I related to, and he typed up a rough draft of a diagnosis report. He had me take a copy home to look at and "edit" or mark any info he had wrong, which confused me a little, and around that point he added the ASD diagnosis.

He's a psychologist who kind of specializes in autism and learning disabilities, I think. I found him through a search on a site about autism, but I'm not sure how much that really means. At the first appointment he mentioned/seemed aware of the fact that autism presents differently in women which I thought was a good sign, but he seemed like he'd never heard of hyperempathy/hypoempathy and a few other things like that when I mentioned them. I don't know if that's odd or if maybe I'm just being a little too picky, ha.


Thanks, League_Girl.
I know what you mean about the confusion with sensory issues, and I can relate to some of your other confusion about things as well. Sorry to hear about the struggles you've had with your mother. From what I've heard, sometimes it tends to be the ones closest to us who wanna doubt the diagnosis most, it seems. Even though I don't know the whole situation of course, it sounds like your therapist knew what he was talking about.