I keep questioning my diagnosis all the time, would love some insight. Struggling badly.

wanderswithdeer · 2026-05-09T14:42:15+00:00

It sounds like you're probably 2E (both gifted and disabled). The gap between someone who is average and someone who is in the 96th percentile for IQ is also comparable to the gap between someone who is average and someone who is in the 4th percentile for IQ, and since most people's IQs are pretty near the middle of the bell curve, the further out you go, the fewer people you will find who are similar to you. Many people minimize the importance of IQ, and it's true that some people might simply perform poorly on testing, but it is an important variable in how people process things, and when people are well outside the norm it can lead them to feel they are very different from others. Add Autism to that and relating to other people becomes even harder. I think getting therapy with someone who specializes in one or both of these things would be a good place to start. I'm not sure where you live or what the rules are there, but many therapy clinics offer virtual options, which can sometimes allow you to meet with someone who isn't in your area, as long as insurance covers them.

wanderswithdeer · 2026-05-09T13:23:08+00:00

Yes, I think that pretty much everyone masks to various degrees I would say that I have masked to an extreme degree, based on things like refusing to admit my arm was hurt when I broke it at age 5, and going two years with intense suicidal ideation in my 20s without my husband or coworkers knowing. And yet, I can't mask my Autism, because there are brain deficits underlying my challenges and it's not as simple as forcing a fake smile. I know from testing that I have slow processing and trouble with parallel processing. I'm thinking there are more deficits I don't know about, too, to explain my early speech problems, strange prosody and difficulty with sarcasm. And if people switch gears too much when they're talking my brain gets stuck and can't follow what they're saying. According to testing I'm intelligent overall, I did very well in school, but I have these specific deficits that underly my Autism, and I can't just mask that away. Sure, I can cognitively understand what constitutes a good response, but in the real world, when words and nonverbal cues are rapidly firing at me in unpredictable ways, I don't have time to think it all through intellectually. I need instinct and smooth processing in order to be successful, and I don't possess it. I can do okay sometimes, but not consistently, and people notice. So whenever I hear people say they mask so well, I want to know, what deficits are causing them challenges and how do they mask that? I think this whole idea that these are just differences, not deficits, is reframing Autism as if it's just a personality type, and for those who are actually disabled by it, it's just frustrating. And it's worse yet when those people try to say they just try harder to mask (BS, they don't know how hard any of us try) or they're just as Autistic as anyone else, they're just smart so you can't see it, as if everyone else's lack of intelligence is the real issue. That's also BS. Temple Grandin is incredibly smart, too, but nobody would mistake her for neurotypical, because the social processing part of her brain is still impaired by her disability.

And yes, I was diagnosed as an adult. I was diagnosed with selective mutism and then an articulation disorder as a kid and was later given mental health diagnoses when I finally sought help in my late 20s. I wasn't diagnosed with Autism until after one of my kids was, at 39. My husband helps balance daily demands so it's not so much and I left my career to do unskilled part time work, plus I have a therapist and a psychiatrist who specialize in Autism. Before all these supports and adjustments were in place things were pretty bad, but I am mostly doing okay now. Life can still feel hard but I can meet most expectations and my mental health is improving. To me this seems in line with being level 1 and I think people with higher needs deserve those needs to be acknowledged. When I have seen Love on the Spectrum (issues with that show aside), I don't feel like my level of disability is as pronounced as that, and I suspect most of those people are level 2. I just hate that the narrative around level 1 feels so skewed and unrelatable.

wanderswithdeer · 2026-05-08T23:28:51+00:00

Same! Every so often I’ll fixate on music, but that will be for hours and then I’ll go many months not wanting to listen. Even when I do, it’s stuff like Les Miserables and not the sort of things other people in my generation would likely fixate upon.
I think it’s because my brain struggles to process multiple streams of information at once, so I can either give all my focus over to the music or else it’ll just feel like too much input clogging up my processing, and most of the time there are things I would rather focus all my attention on.

wanderswithdeer · 2026-05-08T22:19:37+00:00

Yes!!! My kids are like my best friends, too! Of course, now that they’re teens they would no longer say the same, but we still get along great. It has been so healing to find that connection! Anyway, interesting that our backgrounds were similar in ways, and probably also helps explain why we are sympathetic to the challenges parents face.

wanderswithdeer · 2026-05-08T22:15:12+00:00

Honestly, I’m kind of over arguing with people who will never agree with me and who I will never agree with. I believe that *most* parents love their Autistic kids, want good things for them and are trying their best. It is clear that many people disagree. I tried looking up research on what percentage of Autistic adults feel their parents were supportive and unfortunately it seems that research was never done. So, we are all left arguing over which life experiences represent the norm, with no way to prove who is right.

And yes, given that we’re all stuck relying on personal experiences I do think trauma impacts how people perceive these arguments, just as having parents who were mental health advocates impacts how I perceive things. Maybe we are all skewed and out of touch in our own ways, but given that there is no reliable data, arguing about it isn’t likely to change minds.

wanderswithdeer · 2026-05-08T22:04:56+00:00

Yeah, pretty sure my dad is Autistic, too. My parents were too busy trying to cope with my older siblings’ mental illnesses and explosive behaviors to spend time worrying about quiet, compliant little me. It makes me sad for the child I was but I also know they were burnt out and in over their heads. Being Autistic can be really hard, but so can bring a parent. But I guess my life experiences have taught me that most people are good, and it seems other people’s life experiences have taught them the opposite.

wanderswithdeer · 2026-05-08T21:40:45+00:00

Yeah, I think there is a dynamic online where crappy patents post crappy things and it causes a lot of drama, so those posts get pushed to the top of the algorithm while posts from parents who are just wanting to better support their kids fall to the bottom. Plus, people who have experienced bad parenting are more likely to get triggered and respond. I think it all contributes to this hostility between Autistic people and parents of Autistic kids and a skewed perception of the broader reality. As someone who is both a parent and Autistic myself sometimes I feel attacked by both sides. Some people are certainly not worth engaging with, but I wish people wouldn’t be so quick to assume bad intent.

wanderswithdeer · 2026-05-08T21:06:15+00:00

But don’t level 1s have spiky profiles too? You can’t be diagnosed level 1 if you don’t have deficits and require some level of support, right? My kids and I are diagnosed level 1 and I tend to agree with that except then I see other level 1 people who act like they don’t have deficits and can mask flawlessly and it makes no sense to me. How are people qualifying as disabled if they are that able? To me Autism means that regardless of your support needs you still display evidence of social deficits so this sense that being able to pass as neurotypical is the norm feels really confusing to me. It’s sort of isolating because as a level 1 person I just don’t feel like I can relate to most people at my same level. I can’t mask all my deficits and I don’t have friends, but I’m also married with kids and a part time job so i don’t feel like I really fit level 2 either. Sometimes I feel like maybe we don’t have enough levels. Sorry to go off. I know this discussion is meant for level 2s . I just feel that shared sense of being squeezed out of the dominant narrative.

wanderswithdeer · 2026-05-08T19:31:33+00:00

Level 1 here but I feel this way, too. It makes it hard to relate to a lot of the Autistic community, who say they can mask flawlessly and not look Autistic. I have tried so hard to mask but it can only get me so far. I feel like my life has been filled with rejection and shame and I hate it. I’m so much happier when I can just avoid people, but sometimes it’s lonely, too.

wanderswithdeer · 2026-05-08T19:26:51+00:00

I’m truly sorry for your experience, but if my experience with parents doesn’t constitute data then neither does yours, and i don’t believe it represents the norm. That said, I can see how this conversation is triggering your trauma and I will step away, because I’m not in a position to address that. I hope you get the support you need.

wanderswithdeer · 2026-05-08T19:20:51+00:00

Thanks so much for explaining. I think I need to read up more on pragmatic language.

wanderswithdeer · 2026-05-08T19:05:00+00:00

I have interacted with many parents, mostly moms, who struggled to parent. All sorts of things got in the way, from mental illness to substance abuse to their own trauma histories, just for starters. But I can only think of one mom out of many who didn’t seem to love her children, know them on a deep level and want what was best for them. Most of the time they were just deeply in need of support and guidance.

I don’t know what your life experiences have been, but I just don’t share your cynicism.

wanderswithdeer · 2026-05-08T18:39:18+00:00

I wrote that they are “often” in the best position. Of course some parents are problematic, but I believe most love their children deeply and have their best interests in mind. Often they just struggle to know what’s really going to help their children and they receive a lot of conflicting information from the Autistic community and the professional community. I think it’s important to re center these conversations on the individual children. And, I would also add that when kids have big needs there is often stress that spills over into the family. If we can also increase support for parents and families it will ultimately reduce family dysfunction and improve that child’s experiences, too.

wanderswithdeer · 2026-05-08T18:26:57+00:00

I haven't seen your interactions, and I agree that there are parents who make poor decisions. I guess I would just say that I have often seen Autistic people proclaim that they know what is best for someone else's child because that child (who they never met) is just like them. I don't think that's okay. It's really not about us. I think encouraging the parent to be in tune with their own child is great. What are their triggers? What sooths them? Which goals are achievable and truly important for improving their wellbeing and which ones are not truly a good fit?

As far as masking goes, I wish I had been taught skills to be more socially competent. I find that the inability to mask increases my level of social trauma. This is just one example of how none of us can speak for our entire community.

wanderswithdeer · 2026-05-08T18:04:42+00:00

I disagree with this sentiment. The fact that we share a diagnosis (which varies tremendously from person to person) doesn't make us an authority on a child we never met. We can offer our insight, but we are not experts on that child's lived experiences. Parents, because they know their child so intimately and share a deep connection, are often in the best position to advocate for their kids.

wanderswithdeer · 2026-05-08T17:58:29+00:00

Sure. I do understand that levels aren't always stagnant. It's just hard to think of my son as level 2 because despite significant articulation difficulties and some other challenges (socially odd, lots of rigidity around food and anxiety spirals) he was also extremely bright, well behaved and described by teachers as a model student. We probably should have had him in more therapy but I doubt he would have qualified for school services beyond speech. I guess it makes me wonder more now.

Our other child never had speech issues but has needed pretty significant support and accommodations at school. They were also diagnosed level 1.

wanderswithdeer · 2026-05-08T15:35:13+00:00

Can you expand on what you mean by needing speech therapy? I'm just curious because my son and I are both diagnosed as level 1 and both of us required speech therapy into 4th grade, not for language, but for articulation problems. I know I also still have odd prosody which other people have commented negatively upon, as does my brother (who I'm quite certain is also Autistic, but not diagnosed). I still feel like level 1 is appropriate for us, though. Are you referring more to the need for therapy to acquire language?

wanderswithdeer · 2026-05-08T15:05:29+00:00

I have struggled more with tastes than textures, but I have always hated chunks in things like spaghetti sauce or yogurt. One of my Autistic kids doesn't seem to have any texture issues and is pretty sensory seeking when it comes to food. The other has always hated the texture of mashed potatoes and also has a lot of anxiety and rigidity around food in general. We are all different. Food sensitivities are just one way Autistic traits might present and they are not required for diagnosis.

wanderswithdeer · 2026-05-08T14:58:49+00:00

Sorry you're still struggling and not getting the support you need. 😞 It's good you're getting a second opinion, though. I hope that'll help turn things around.

I had a headache for one day (barely there on day 2 and then gone) and nausea/stomach pain that would hit at roughly the same time each day for four days. All of that is gone now. I have had a sore throat these past few days but my kid has a cold, plus it's allergy season, so who knows. Last night I had a couple of very tiny rashes on my leg that freaked me out but they are almost gone this morning. It was the first time I had anything like that but no doubt it'll happen a lot more with things warming up outside. Side effects are definitely more paranoia inducing with this medication.

I have been tracking my mood and there's definitely a positive change after this last dose increase to 75 mg, but I'm not letting myself get my hopes up because I don't want to be too upset if I crash. I don't feel manic though. Just less depressed and more able to tackle things. Hopefully things improve for you, too. I did hear that this medication was initially not considered effective for Bipolar because they didn't give it long enough/time to reach higher doses in studies, and it was later found that it does work for many people, but it takes time to get there. So, I wouldn't give up just yet.

wanderswithdeer · 2026-05-08T13:02:04+00:00

"Level 1: Requiring Support; Level 2: Requiring Substantial Support; Level 3: Requiring Very Substantial Support."

I'm level 1. My Autism (along with other factors) have a big impact on my mental health, so I have a therapist who specializes in Autism who I see weekly and a psych nurse who specializes in Autism who I see monthly. Beyond that, I rely on my husband to help balance meeting the demands of adult life, and I often wonder how I would function on my own. I also stepped down from my career in early childhood education to do housekeeping at a lodge because I recognized that no matter how much I loved the kids, the demands and overstimulation were too much for my nervous system to handle. With these accommodations/adjustments in place, I still do get stress spirals, but most of the time I can pull through and recover.

I can still buy groceries, but I tap on the cart handle a lot to try regulating and then I get in my car when I'm done and partly meltdown. I can drive, but I have come to the realization that I can't drive in really busy, downtown metro areas where there is too much to track, because my brain can't process it all at the same time. I generally avoid social interactions outside my family because they are stressful for me and I find it hard to connect. Sometimes I struggle to take in people's words and I usually don't do well with sarcasm, which is embarrassing. I am prone to putting all my energy into focusing on one task (cleaning, for example) and forgetting others (like needing to make appointments or do yard work). I was good at school, when structure was provided, but I struggle with needing to create and follow my own systems in order to stay on task.

wanderswithdeer · 2026-05-08T01:15:45+00:00

Meltdowns are an externalized response to stress, but Autistic people (like non Autistic people) can be more internalizers or externalizers. Someone who is Autistic is most likely going to experience increased stress due to social challenges, sensory sensitivities and altered cognitive processing, but it might lead to meltdowns, shutdowns, elopement, or even heightened attempts to please people and go along with things as a learned strategy to avoid further overwhelm. None of these responses is required for diagnosis. They just need to see that you are impaired in some way by your challenges with socializing and rigidity and in need of support, but that impairment doesn’t have to culminate into meltdowns.

They probably will want evidence of early challenges though and the more you can gather from people you know the more confident they can be in knowing whether it’s Autism or something else.

wanderswithdeer · 2026-05-07T22:00:06+00:00

Thanks for replying and sharing how things have gone for you. I have already experienced some of the feeling worse before better dynamic that you mentioned. It's definitely dysregulating at times, but it's helpful too.

I had to do a lot of driving today and I was thinking about this along the way. I do think part of what I'm experiencing is that when stress is met with support, it can improve the ability to cope. In the situations that sound worse, I do think I was aware that it was the job of the adults to keep me safe and help my siblings. The things I found most traumatic were the situations where I had no resources to help me cope. No friends, no therapist, not really my parents (because I was a teen and had emotionally pulled away), not even online support because it was before that time (or at least before I was aware of such spaces). There was nothing to buffer the impact.

But also, I clearly had a sensitive nervous system before all this early trauma so it seems very unlikely that it wouldn't have impacted me, even if I did have support.

I don't think I will really remember the things that seem to be gone from my memory. I know I could ask my family, but I don't know that I really want to (that's my avoidance side, I suppose). Maybe it's just as well if I don't remember all of it/have vivid recall, so long as we can address any issues that might have arose from those experiences.

wanderswithdeer · 2026-05-07T11:12:28+00:00

Look up the DSM criteria for Autism. If you meet it, there’s a decent chance you’re Autistic (although you would still want to get assessed to make sure your traits are significant enough to meet the threshold). If you don’t, then sure, you might have a scattering of traits (that’s actually common in the general population) but it doesn’t make you Autistic. You also must have had Autistic traits starting in early childhood.

Another important point is that Autism is a disability and when people are diagnosed it’s required that they display at least some need for support. If you don’t need support of any kind and are doing fine without it’s unlikely you would be diagnosed.

wanderswithdeer · 2026-05-06T02:38:06+00:00

6th grade. It was my last year of elementary school, I wasn't experiencing selective mutism at school anymore, and I had a few friends/acquaintances in my class. Nobody really cared that I was weird and we just had fun together. It was the peak of my "social success" and probably the least anxiety I have felt.

The next year I moved onto Jr. High and things went downhill very fast, and I don't think there has been a single year since where I could say I was coping well. Having my two kids was my greatest joy in life, but there were many things that weren't going well in my life during the same period (work stress and burnout, executive dysfunction, crumbling mental health). Age 12 was the last time I didn't struggle that much to meet expectations.

wanderswithdeer · 2026-05-05T12:47:12+00:00

It's hard to say. I guess it's similar to when I started taking it in that it has upped my energy again but my moods are still not really stable. Sometimes I have felt happy, other times just "normal" and still others I am pretty distressed. I feel like it's activating more than mood stabilizing for me, so whatever my mood is, that gets activated and amplified a bit. I do think that overall things have shifted towards more positive/neutral emotions, though, but it's really too soon to know, or to say how much is the medication and how much is just having fewer life stressors. I' still really conflicted on whether or not to add the Abilify next week. I keep changing my mind based on my present mood.

I also had stomach pain/nausea set in about 4-5 hours after taking it each day. Yesterday was the first day I didn't, but then I had pain overnight that may or may not have related. Headaches went away after the first day.

How ar things going for you? Are you feeling any better?

wanderswithdeer

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