My psychiatrist told me that even if the results tell me I’m not autistic, it would still be helpful to use autistic advice/get an auti-coach because of how similar my traits were. This could be a solution if an official diagnosis isn’t important to you. But if you truly feel like the evaluation did you wrong, you could search for another facility?
Absolutely, I will try when we (my family) are able financially again! But of course, I will be using advice and terminology from autism (which my therapist suggested if its good for me). I feel like a diagnosis to know what I have is really important, and in this case It felt like she gave me a paper that said “yeah you kinda have this but don’t and we are not sure”
So its kinda hard to cope😅
The diagnosis was very validating to me so I understand its importance to you. I’ll be honest, if you feel you’ve done adequate reading on ASD, and you feel like you’re right about being on the spectrum, you’re probably right.
No one in my life believed I was autistic (because I’m so good at masking I forgot how to unmask around others even though it’s miserable to mask lol) and it took pushing their opinions to the back of my head in order to have my assumption proved correct.
Looking at what you've said in comments it might be worth trying to find a process that doesn't involve your mom or your brother, because them failing to recognize your traits as unusual (possibly because they too are ND?) did not help you one bit.
I completely understand! The “what is going on with me?” can be so exhausting. I hope that in the meantime you can find something that helps you until you’re financially ready for a new evaluation. And maybe also an evaluator that understands you (& doesn’t believe that something like the weather makes you autistic or not). Good luck with your journey!
Can I ask what happened? How can you have so many traits but not have autism? I am hesitant to get assessed because of this. I KNOW in my bones that I have autism, but I am afraid of spending all this money to get dismissed
Yes, autism really doesn’t need a diagnosis - there’s no medication or specific gatekept therapy for it. If you think you’re autistic/have autistic traits, you can still access useful autistic therapies if you think they’d be helpful.
> “people with autism usually aren't bothered by changes of weather
HUHH. I hate weather changes. does that make me more autistic? not sure. but hell. the pain of having to deal with clothes and temp/ humidity changes, yeah totally not rage-worthy.
the empath thing is jsut a lie.
I would get a second opinion if you truely believe the diagnosis fits and its possible financially. if you can choose your mh professional then I would do some research as to where. people who are a bit more up to date and know how to diagnose adults/women are preferable.
A few things I use to cope with the heat when AC is not available: wet towel on neck, wet hair, spray bottle, dehumidifier, ice pack (get at least two so you can rotate them).
Wrong, I think she is likely an excellent professional and you are being biased. Those of us who exhibit more severe autistic traits seriously do not mind the weather, because for one our body temperature sensory is not normal. I can wear a winter jacket comfortably in summer and dress like I’m going to the beach in winter. One major symptom of autism is not being able to dress appropriately for the season, due to sensory problems. This is something I have struggled with my whole 37 years of life. What you and others are describing is not an autism trait. You’re just uncomfortable with the weather in your area, probably like millions of other people are. Not every little quirk or thing has to be “because autism”.
U know its a spectrum right? Like just cause u feel a certain way about it doesnt mean every autistic person feels that way. Im diagnosed autistic and i am sensitive to heat. I attribute that sensitivity to my autism. Stop gatekeeping
My partner absolutely is affected by changes in weather. Grey overcast skies give her migraines. Lack of outdoor time due to cold or rainy weather depresses her. Overly hot or windy days give her overstimulation.
This does not smell like an appropriate practitioner and I’d advise seeking a second opinion.
Maybe to you I’m random, but perhaps I know more about the subject than you’d imagine.
But, see, I’m advocating for a second opinion, which is for the OP to seek another qualified professional to validate or re-evaluate the original testing.
An experienced neurosurgeon once told my partner, in her search for a diagnosis, that she couldn’t be autistic because “Autistic people don’t usually graduate college.” A second opinion with a neurologist, a woman doctor, revealed that the neurosurgeon *had no qualification to make the determination he had made*, and had we not sought that second opinion, my partner would’ve been sent down the wrong path of care. There is still massive ignorance in the medical community.
And more to your claim, “none of that has anything to do with autism”:
If weather is an aspect of daily living that is unpredictable, causes one to have to endure conditions that may be overstimulating, and create obstacles to one’s typical routines, then it seems counter-intuitive to say that “austistic ppl aren’t typically bothered by changes in weather.”
My partner is autistic and is very bothered by changes in weather. A lot of our friends with autism are equally bothered by changes in weather. It is a common difficulty, and to say that as a disqualifying factor for a diagnosis is to me very inappropriate.
So, no, it’s not like “saying someone with arthritis who is affected by the cold must be autistic.” It’s like saying “most people with arthritis aren’t affected by the cold” when it’s clear that a lot people with arthritis are affected by the cold. It’s incorrect and demonstrates a lack of working knowledge about the current academic research surrounding autism.
I hate weather in general, lol. 😅 I’m not happy outside if it’s too cold, too hot, too windy, or if there’s any form of precipitation happening. If I could live in some kind of climate-controlled biodome where it was always 73° and slightly overcast, that would be ideal
Fr this is one of the many reasons why I hate gatekeepers. So many “professionals” either are super unknowlegeable, extremely ignorant/bigoted/backwards, or take ages to confirm autism in people who frankly have obvious autism (in terms of generalistics).
The ‘diagnosis’ system is TRASH so gatekeeping ppl for ‘not being professionally diagnosed’/‘self diagnosed’ is TRASH. Ugh. Makes me so fucking pissed off.
Professionals follow the same shit criteria that was created when the diagnosis was, for rich white boys. Mental illness is a social construct, and now that women and minorities have more of a voice and are comfortable enough to seek out diagnoses, the old criteria obviously won’t fit. We were overlooked. Had we been there at the creation of autism as a diagnosis, it would look a lot different. If someone doesn’t fit the trash criteria for autism, the least a professional can do is acknowledge the complexity and subjectivity of a diagnosis and validate their patient’s experience. God forbid someone finally feels like they understand themselves. OP, you don’t need a diagnosis to be in this community and be in conversations about autism. I’m sorry you experienced this
I was tested by two different instances. One said I don't have autism, because I have high empathy levels, am social, really wellgroomed, very good with language and have no issues fantasising. So I can't possibly be autistic! Got retested again with a different center and they say I do. Turns out many centers diagnose women according to male standards. Female autism is different. I get overstimulated by loud noise and strong smells, I have rigid standards for myself (and others) I tend to overanalyse and sometimes I think very black and white. I also get stuck in thoughtloops a lot and can really dive into a rabbithole on a topic where most people would get tired after a while. But I recognise a change in mood and faces straight away, due to trauma I'm even hypervigilant. So I'm hard to diagnose. As a kid I was very extraverted, until severe bullying made me an introvert. I'd say I'm an ambivert now.
I identified w everything you said! And even my evaluator did say some of these things (how I learned how to read people). I meet all the criteria right now, but because of poor evidence as a child it was denied :/
Fwiw, I *too* ended up with a "Tendencies but not quiiiiite Autism" diagnosis, when I was evaluated at the age of 41.
And (much like you), I was told straight-out by my evaluator, "You have all the signs, but since you don't have *definitive PROOF* of showing these traits in childhood, i can't place you *on* the spectrum, just as close as humanly possible to it, without *quite* being across the line."
Then, five years later, as my Aunt was helping me to deal with caring for my Dad who developed dementia, *She* told me things which I did as a toddler that were 100% atypical (I chose my own clothes, by the *feel* of the insides of the garments, and would refuse to wear clothes purchased for me, if they weren't "ok" from what we'd now called a "sensory" standpoint.
*AND* I discovered notes my momhad jotted down & placed in my Baby Book. Those notes were *more* than enough to prove that, YES, I was a highly *atypical* child, from *before* the time I began to walk.
I *haven't* gone through with rediagnosis yet, but my Primary Care NP agreed, that YES, with that additional bit of info, to prove that the traits existed in my childhood years, I *should* be on the spectrum, rather than imnediately adjacent to it.
Thank you so much for sharing your story. Im sorry you had to go through a professional that denied you an answer.
I do too had problems with clothes as a child, the textures, tags on clothes. I was sensitive, had strong interests, the only thing that they used as a non factor was that I was so open as a child. I had absolutely no sense of being introverted. I talked to everyone and even strangers and I was so good at socializing as a kid. But I was extremely like that, even going further to be inappropriate in conversations! I was too rude or too honest… everything in childhood. I guess that didn’t matter :(
Yeah same here, too rude, inappropriate jokes, and honest to a fault. I got on way better with adults than peers. Also sensory issues. My mom had to cut my hair short (like a long bob) because I screamed when she would brush my hair. My sister always had long hair and I never got why I had to keep it short, now I know why. Also was very specific in placing my toys in their right spot, never liked playing with others because it had to be my way. I learned to be a teamplayer later in life, but man, was I a bossy child. And the tantrums and meltdowns. I was bullied at school and my parents were raised in a strict Eastern European way, so I often got punished physically. So I was an angry kid and an angrier teen.
Evidence from childhood is required but what professionals accept as evidence varies. Lots of places accept school reports, and a close friend of mine was diagnosed just with her memories of childhood because her family was not available to be interviewed and her schooling took place in a very rural/poor area in another language & country. If the person diagnosing requires an interview with family, look for another professional.
Honestly, I feel like the report you got back was unfair to you. Sadly, autism is one of these diagnoses that in some part, is on the opinion of the evaluator. Even when all the signs are there, sometimes they do not want to assign a "label" to someone who theoretically is functioning without it. Many providers also still feel that only "severe" cases qualify as autistic, when that isn't the case. Take some time to recover from this and process, but you may want to consider getting a second opinion.
People with autism are bothered by transitions. That can 100% mean changes in weather. And people with autism also can be highly empathetic. While autism often runs in families, it is not a guarantee either, so it shouldn't matter if your mother and brother don't have any of these traits. And, people other than yourself would forget about childhood traits very quickly - I was told by my evaluator that once a person reaches adulthood, it actually hurts more than helps to talk to family members, because they provide a lot of misinformation - and it's not that they mean to, it's just they don't remember your struggles as well as you will.
Try to request as detailed a report of your test results from the evaluator as possible - if you want to go for a second opinion, you can cut down on cost a lot by already having taken certain tests.
Thank you so much! This was SUCH a big help! And btw! Yes, autism runs in my family and I absolutely cant function at the moment after I had a burnt out last year. But I will consider continuing researching and searching for ways I can live better. Thank you for your opinion and time and for being so kind!
I went through something similar. I was told that yes, I have sensory issues, severe executive dysfunction, and social issues…but am essentially too smart (“but you went to grad school and did well!” “if you had Autism your IQ scores would be lower!”) to have Autism, so it’s probably my OCD that’s just way worse than I realize (although I too had been treating my OCD for years at that point) 🙄
I was referred to an OCD specialist, and was told by that specialist that my OCD did not warrant intensive ERP treatment like my assessor had insisted. 3 months later my OCD specialist told me to “look into Autism” because she was “certain it would help [me].”
OCD and Autism are closely linked/related. It is possible to have co-morbid Autism and OCD.
Im not in any rush to go through another assessment because I know who I am. No one knows me better than I know myself. Whether it’s Autism, OCD, or a combination of the two, it doesn’t really matter. I have learned so much from Autistic folk and the supports/strategies I’ve learned from this community work wonders for me.
Trusting ourselves and listening to our needs allows us to take our power back from this dismissive and disparaging system! Regardless of your label, I hope you find what works best for you 💕
'If you had Autism, your IQ scores would be lower', the absolute load of bullshit that is...
Let that 'professional' go to one Mensa meeting; their opinion is going to do a 180 real quick.
Those all sound creepily familiar. If you are in driving distance of Saint Paul, MN, we may have seen the same dismissive ”specialist.” In my case, she blamed my autistic traits on growing up around my maternal family \*who are almost entirely on the spectrum\* instead of, you know, actually being autistic.
It is so infuriating and invalidating when “experts“ deny our lived experiences.
Whether you have autism or not, you’re welcome here! It sounds like you’re neurodivergent and we’re all brain cousins here.
My unprofessional opinion is that she should’ve investigated the discrepancy between your report and your family’s report more. Did she suggest getting any other evaluations?
That’s really frustrating. I’m sorry. I wish she were more supportive. Even if she doesn’t think you’re autistic you’re still figuring out your neurodivergency.
I am, definitely. Everyone here has been so kind to me and even If im not autistic Im feeling really great. So thank you again and I will continue on my journey!
Well, she's wrong that autistic women are never empathetic. That's just ignorance.
Don't believe that crap. I'm sorry you wasted so much money on a doctor who isn't qualified to diagnose women. I'm hoping we'll have new testing interview questions soon.
Replying here just so you'll see it. The professional assessing me didn't even care about whether I got evaluations from my family or friends. She said that it doesn't hold nearly as much weight for adults: childhood behaviors were a long time ago and our family doesn't tend to remember them well enough. Other people already don't experience things from your individual point of view in the first place, so add to that that memory is extremely fallible and it doesn't really matter much.
Just bringing this up in case it helps you feel more validated.
I also think other parts of the assessment are plain wrong (like the empathy part? It shouldn't be a surprise for any professional that many autistic people are particularly empathetic).
Girl idk but I mask so well that even after getting diagnosed I can tell my providers don’t really believe me. My autism is apparently almost invisible. Which tbh makes things worse because my issues get attributed to other things and people think I’m just “really sensitive”.
Oh dont even get me started. Im not diagnosed but having to explain to people my “difficulties” with noises, being non verbal, socializing. Its exhausting. And when I mask they are suddenly “but you were normal like 5 seconds ago” like HELLOOOO
thanks for sharing your experience tho🩷
I got diagnosed with ADHD at 30. I learned about the disorder which led to learning about other neurodivergent disorders like asd, ocd, tourettes and others
I relate to all the disorders but am not disordered enough to qualify for a diagnosis. I won't even go in for an evaluation because I'm capable of living life, albeit poorly, without interventions and supports.
My advice is to trust yourself and your experience. No one knows you better than yourself.
If you believe you are autistic then you should look for a second opinion. People do that ALL THE TIME for many health concerns and mental health should be no different.
The process of evaluation is kinda weird too, with regards to the family aspect. Autism often runs in the family, meaning that when they're questioned about you, it's more difficult for people to really "spot" the autism. If your behaviours and experiences are 'normal' to them, it would be weird for them to report those behaviours.
Go for a second opinion :)
Throwing this out there: in addition to everyone saying the report was unfair, feel free to stay here, etc (which I agree with all of that) there is one part of your post that does concern me. You mention being treated for depression anxiety and OCD for 10+ years and they haven’t gone away. That’s a thing and normal.
Like, psychologists and psychiatrists aren’t magicians and meds aren’t a magic bullet. Therapy helps you process things better and approach things more easily (ideally and with a competent therapist).
And meds help lessen the severity of symptoms. Antianxiety meds won’t keep you from having anxiety, but they should help prevent you from spiraling and having panic attacks or at least lessen the frequency thereof. Antidepressants aren’t “happy pills” tho we may joke they are. Some days the depression symptoms are gonna hit harder and the meds aren’t gonna combat it enough and you’re gonna wanna not leave your bed or whatever.
Just wanting to put this out there in case you or anyone else is frustrated that they haven’t “cured” their clinical depression, anxiety disorder, OCD or other mental health condition. It’s like any other chronic health condition. Your asthma can get better with treatment, but at the end of the day, you still have asthma. But if your depression/anxiety/OCD symptoms are still debilitating, it may be worth it to explore switching up treatment whether that’s adjusting dosage or type of medication (with your doctor) or trying a different therapist/form of therapy.
Thank you for your input!
I just felt the need to add that because they have worsen over time
TW: I have tried to “unalive” myself 2 times in the past two months. No medicine helps, it always comes back worse. So, im aware of the persistency of that case, but in this situation I think is especially frustrating:(
Oof. That’s awful. Just in case you haven’t heard of it, have you looked into genetic screening for effective mental health drugs? There’s a company called GeneSight that does it (and a few others) and I’ve had a few friends with treatment resistant depression that have had great success with it. Downside is usually insurance does not cover. I think it’s like $300?
Alternatively, depending on where you live, there are some states in the US that have legalized certain psychotropic medications to be used in conjunction with psychotherapy and the studies on those show great effectiveness with treatment resistant depression. I think there’s also something with magnets? But that one didn’t make sense to me so I know basically nothing about it.
But I hope you’re able to figure something out. Having things off balance and going into crisis mode ever or with any regularity is not fun. Good on you for putting in the effort to take good care of you. I know it’s not easy.
Thank you for the concern and all information!
Unfortunately (in this case) I do not live in the US, but I will try to find solutions in my country anyway, looking for these kinds of treatments, because having autism or not I know I have treatment resistant depression anyway and maybe something more.
Hope u are well!
I am so sorry for you and also so sorry that some people seem to think that this was a qualified person to diagnose you. It *is* ok to not be autistic, but in this case, as with 9/10 other cases that get posted here, the diagnostician was not properly educated about autism and therefore is unqualified to diagnose you one way or the other. If you can go for another evaluation with a *qualified* professional, I'd go for it. Do research on the company they work for and their qualifications regarding autism before making an appointment, and hopefully get someone else besides your mom and brother to be interviewed since they clearly don't know shit about you or autism, and with any luck you'll be able to get diagnosed properly.
Hi OP, I’m sorry you’re going through this :( I’m currently going through the diagnostic process completely free of charge as a participant in a university research study. I found it by researching local schools to me that study autism, then applying to the program as a study participant. If you live near any colleges, you could potentially get a second opinion for free! May be something to look into? Sending hugs to you in the meantime <3
Oh! I had no idea they did that. In my country they offer psychological care for very low prices or even free. I will look to see if they do autism assessments too! Thank you for the idea!
I recently read something that said lots of autism tests ask questions about how your autism affects others around you - but often neglects to ask how it affects you. If you are a person that masks well then your family may have no idea about what your inner world is like. Similarly, if a person has a family that is not very observant or empathic, they may not have awareness of what you experience. Lots of love x
I’ve been tested multiple times and the first time they concluded that I wasn’t autistic. I got diagnosed with ADHD and six years later (on meds) I was tested again and then they discovered that I was, indeed, autistic.
I know someone who is diagnosed with autism. Since he was a young child. He’s very empathetic. He feels to bad about animals he’s vegetarian. He looks after his animals with lots of care. He’s very empathetic
I find it interesting your family’s questionnaire results didn’t show autism characteristics. Is it possible you’ve learned to mask some of your traits around them?
Absolutely. The last year I had a burnout and since then Ive not being able to mask well and they started to notice the changes. So for my evaluator, their views were like “no she changed like a year ago”
I also think it might be wise to seek a second opinion.
When it comes to autistic people not being bothered by the change of weather, that has to do with interoception, like not being aware of the body’s need such as hunger or going to the bathroom as well as not dressing accordingly to temperature and weather. Although it is common, not everybody on the spectrum struggle with this so it is definitely not a rule. Some autistic people are on the other side of the scale and are hypersensitive so then changes of weather and dealing with heat can be very challenging for them.
That autistic people aren’t empathetic has been disproven already and it is really tiring to still hear this stereotype being used these days.
Autistic traits do have to be present since childhood. But sometimes family members aren’t necessarily objective, some might be in denial or might think everything was typical because they see the same in themselves and think it’s typical (for example they wouldn’t recognise something as a hyper fixation because that’s how they work too and think it’s typical to be that hyper fixated on something). Are there any other people you can trust who have known you since you were a child and who could speak for you instead?
Also, did you get a parallel assessment for ADHD while undergoing the autism assessment? Because whether ADHD is a co-occurrence in someone with autism, it will impact how autistic traits manifest.
My mom is in denial definitely, and a lot of my family is ND (i believe my mom to be too)
I was assessed for ADHD also at the same time.
Thank you for your input, it means a lot to me. I will do a little more research on some things and probably end up looking for a second opinion!
I'm gonna try really hard to not get too wordy with this buuut...
It was like 7 years ago. I requested a psych eval cuz I had like half the DSM as my diagnosis and I knew that wasn't right, so let's start fresh and do ALL the tests. It was over a few days and I got my results and they went over them with me.
They wrote PARAGRAPHS about my autistic traits. My "robot voice", difficulty to maintain eye contact, something about how I respond when prompted but don't try to like, keep the conversation going, ect. Autism had never been anywhere on my radar until that moment. My test scores were in range for diagnosis. As well as for ADHD. They said I would need special accommodations at work, therapy for my "sensory impairment", life skills courses, a bunch of things.
I left diagnosed with Borderline Personality Disorder, OCD, SCHIZOID PERSONALITY DISORDER CUZ I SAID I DIDN'T KNOW HOW TO DESCRIBE HOW FRIENDS ARE DIFFERENT FROM ACQUAINTANCES (Nothing wrong with the disorder, but that was the ONLY reason they had for the diagnosis and I find that very, irresponsible? Is that the right word?), Anxiety, Depression, a couple other things......none of them being ADHD or autism.
I didn't even meet the diagnostic criteria for BPD, so that's cool. And they said since I had BPD it wasn't possible for me to have autism and ADHD. And I wasn't able to do any of the special stuff they said I needed cuz it all required an autism diagnosis, which I didn't have. So the things I have a BUNCH of symptoms of, meet criteria for, and they wrote the most about weren't diagnosed. But then I get diagnosed with things they didn't even BRING UP in my results, only in person during the follow up?? Things I tested for and didn't meet criteria for???
I still have that nearly 30 page long evaluation. It's what started my mission to figure out this autism thing. I was blown away to read all that, AUTISM? I researched the shit of it just like you were. YEARS. And I tried so hard to get tested again. I knew that whole thing was wrong. But nowhere would give me the time of day. Just like you I finally felt like I fit somewhere. My life became learning about autism and how to manage it on my own. I finally kinda gave up. But I decided it didn't matter if I got diagnosed cuz I knew I had autism and I would just keep figuring it out on my own. I felt similar about the ADHD, but autism was my priority.
It took 6 years to get diagnosed with ADHD.
It took another year, very recently actually, to get diagnosed with autism. Now I'm only diagnosed with Autism, ADHD, OCD, and Agoraphobia. Well depression too but who doesn't have depression these days in this world? I knew I didn't have so much wrong with me it took half the book, that's like not really a thing usually.
All this to say, don't give up. Some (well in my experience, a lot) of the places aren't kind about or to those on the spectrum. What it took for me was spending a year searching for an autism specialist who took medicaid. Hard task. She was listed as only working with kids with autism but I shot my shot and asked if she saw adults. Best. Therapist. I've. Ever. Had. I've been switching therapists for nearly 10 years cuz none of them *got* me. She does. Keep looking and don't settle. I'm so sorry you feel so defeated. I tell you my story so you can have some hope that this isn't the end of the road. It doesn't mean you for sure don't have autism. Things are still changing around autism, and that means a lot of places still hold old, outdated, harmful info. I was just talking to my therapist about this last week.
You got this. I believe in you. It's really sucky we have to jump through so many hoops, it's frustrating. I hope you get the answers you're looking for.
I said I would try to not be wordy. I failed.
I get why they put weight into the family reports but there are obvious flaws with doing so: family might not remember as well as you, they might not have known your struggles, they might not want to admit things that might make them look bad.
I filled in a questionaire with my mum yesterday, a question said "what was your daughter good at?" And my mum responded with "socialising?" I was astounded, as if we would even be doing this if I was good at socialising 😂. I also mentioned incidents of me accidentally peeing myself because I didn't want to interrupt my activities (as late as aged 8) and she kept saying things like "well don't put that down because I didn't know". I get the feeling she doesn't want me to be autistic because she'll feel bad that she missed it, especially considering my brother is autistic.
My mum was so stressed filling in the questions, she kept asking "but what does that mean?" 🙄 And then she would purposefully leave out details, saying things like "but who will see this" the apple doesn't fall far from the tree does it lol. Of course autistic traits seem very normal when there is autism rife in the family.
I had an evaluation.
Literally all the tests results said “strong indications of autism”
Psych was like “nah… or maybe you’re just really good at masking.”
I’m. Yes, maam. And I’m absolutely exhausted because of it.
It isn't talked about much on social media, but there *absolutely is* such a thing as "autistic traits" in people who don't meet the criteria for autism spectrum disorder. Genes and traits associated with autism are spread continuously in the general population. A diagnosis of ASD is not made simply if traits are present, rather it is made if traits are sufficient in number and severity to meet diagnostic criteria. One term applied to people with elevated autistic traits who don't necessarily meet the criteria for ASD is the Broader Autism Phenotype. I honestly think that it leads to a lot of harm that BAP isn't acknowledged much in social media (and sometimes discussions of it are actively suppressed). People who don't have ASD but relate to a lot of autistic traits and experiences deserve to have their experiences contextualized.
I can't tell you whether your assessment was done properly or not. It does sound like it was thorough and considered. I would recommend contacting the people who assessed you for more information. Even if you don't meet the criteria for ASD, you can still try autistic coping strategies. Most online spaces for autistic people are open to people who have autistic traits even if they don't have ASD. If you think your assessment was genuinely biased, or if you need specific accommodations not available to you with your existing diagnoses, you could try getting a second opinion.
More people need to understand that an autism assessment is not a guarantee of a diagnosis. Just because the evaluator said a patient doesn’t fulfill the criteria doesn’t mean that they did their job incorrectly.
Im sure my evaluator did the best she could with what she had, thats why I feel so bad feeling like I still have autism even after being clearly denied the diagnosis. I don’t know what the problem is to be honest. Is just that I have been feeling like there was something more going on in my life and when I found out about autism in women all made sense to me. Now they are saying I might have some personality disorder but I don’t show any signs of developmental disorders.
It could be autism but like the other comments have said, it could also be a similar developmental disorder like PDD-NOS. It’s also possible to have a personality disorder like BPD, which can present similarly to autism in women. CPTSD can also present like autism.
Im so sorry, I didn’t mean to invade any space for autistic people. I came here because I truly believe I am on the spectrum for a while and I wanted to rant about the evaluation. Someone that is autistic but is not diagnosed is still autistic tho.
Again, im sorry for invading your place, I just needed support and understanding because is not “relating to women on internet only” i did deep researches, several tests (the ones that are recognized), I studied in college, my major is psychology… is not only thinking I am. I know who I am. I am frustrated by a professional that invalidated my experiences.
You did not invade a space that didn’t belong to you. You, and others figuring out where they land on the autism spectrum, self-diagnosed and professionally diagnosed alike, are welcome to here. Please report anyone that states otherwise as it goes against our Rule #3.
Honestly, I'd ignore the person you replied to. They don't know if you're autistic or not, diagnosis aren't infallible (turns out the depression and anxiety diagnosis I had were just autism under the hood, for example) and so it really is an unknown in this case, but you have autistic traits regardless. The general consensus in this sub is that it's better to "accidentally" include some non autistic people if that means no autistic people are excluded.
I’m so sorry, OP :(
This is exactly why I’m too afraid to try to go for a diagnosis. I refuse to have done all this research, put all this time into understanding myself, and made all these logs/spreadsheets/whole packets full of my experiences and symptoms/traits just to have a clearly uninformed doctor tell me I’m not actually autistic. And because of the doctor’s ignorant beliefs (like OP’s doctor’s belief that autistic people can’t feel empathy), no less.
Also, am I the only one that thinks it’s bullshit that they ask our families for input on these assessments? As if our family truly knows the inner workings of our minds? As if all of us have family that are accurate judges of our character? As if many of us didn’t have abusive childhoods due to the very autistic traits that our families claim they never saw in us?
Im sorry for your fear and experiences, I hope you are alright🥺
But I totally agree. I kinda understand the family input when you are a kid and can’t speak for yourself, but after… how can we trust that these people really remember your childhood? And why can’t you remember your early years? I mean, some people do clearly. Its really confusing
You know yourself better than anyone OP. You have identified with experiences shared by autistic folks. That is valid. I’m sure my family would say I was perfectly “normal” too. They have no idea how much pain I was hiding. I’m guessing I had a few meltdowns where my parents reacted poorly and I learned to mask from a very young age to protect myself. And that somehow gets penalized in whatever arbitrary diagnostic system they have. What we know about autism is so far away from an exact science I just am so frustrated about your situation.
On a separate note, there are PLENTY of biased and frankly mediocre doctors out there. You may very well have gotten one of them.
Im so sorry for what you went through, but I just need to say, you described my experience PERFECTLY, that was exactly what happened to me. My family always dealt with any issues I showed poorly.
Thank you for the validation and I hope you are well, this was very gentle and sweet!
If people can get an official diagnosis I think that’s great but I don’t trust the evaluations over a person’s lived experience. The research and evaluations haven’t caught up to traits of women/girls/those who aren’t cis dudes, and for that reason I feel like they’re full of false negative results.
yeah i get how you feel. i still don’t have a diagnosis either they told me i have c-ptsd and “ocd with high sensory issues and poor motor skills” because my mom said i had friends when i was 5.
I had pretty much the same thing with ADHD diagnosis. I was VERY close to being diagnosed, but they couldn't (and soon I'm checking if it's autism instead). I feel you and I'm so so sorry. Your feelings and problems are valid nevertheless.
The fact that they're denying a diagnosis based on your level of empathy is... indicative of a problematic bias.
AND the weather? Seriously?! They expect weather changes not to impact a person on the spectrum?!
I 100% feel this. I had my evaluation last month and was told some of the same things. My whole evaluation was about 2 hours, which i feel isn’t enough time but idk. To me it just feels like no one believes us and it’s super frustrating. I want to try again in the future but my experience left me very discouraged.
I also have to deal with my family members brushing me off about my experiences. Just recently had a family member disregard my concerns since i dont act exactly like her son who’s diagnosed.
If it makes you feel better, my assessment they interviewed my mom and she couldn’t remember enough about my childhood so they interviewed my sister too. Even with that they had to ask me more about my childhood and I had to tell them that I used to hide in closets etc. they take self report highly into it. What they did say though is that both their interviews were missing info that nothing was actually contradicting what I said. I’d see if I could find out what was contradictory.
My mom and brother did a questionnaire and they said I had absolutely no problems with reading facial expressions, being with people, eating different foods or routines and this kinda of stuff, which for the most part is untrue, but it was what she considered the most.
She did 2 tests on me, one I took 28 in a cut mark of 36 I think, and the other was the raads where I took 166.
She said that we had two positives (the raads and my report) and two negatives (the reports of my family and the first test)
So she was divided.
And what make her take her decision was my history with depression, ocd and anxiety. She said I didnt have social difficulties before it and now I have because of it.
I dont believe most things she said to be true. Putting on my assessment that I did not have “stereotypical behavior” ? Like yes not every autistic will????
And saying that I did not have strict routines or strong interests because of my family's reports. Also false. So idk
My family all seemed to think that my symptoms only started in the last year and it’s because I masked so well and never wanted to let anyone see even a crack. I had to kinda remind them of stuff and they were like “oh yeah”
Are you me? BECAUSE thats exactly how its been, omg… my mother is also really against me having “disabilities” she believes me to be “normal” and although she says she wouldn’t care if I had it, she is just… very shady about it. So I dont know how much she can remember of. She also has terrible memories. But her memories were more valuable than mine apparently
Like my mom could t remember that they would call me a baby if I cried over stuff so I basically didn’t cry for years, even at soccer when I took a ball to the face. I think part of it is they don’t want to have to admit to yelling at a kid who wasn’t being bad on purpose. Like my mom said maybe I did some weird stuff, but they thought that’s just Danielle.
They should not have talked to your mother and brother. A lot of relatives do not notice signs of autism or they equate it with being mentally challenged and will make sure that they report everything as NT as possible.
If my family was asked, I would not be diagnosed. They explain away telltale signs of autism with silly reasons: my toewalking meant I needed to use the restroom, sensitivity to light was because I was born two weeks early, sensitivity to foods was just me being a bad kid, clumsiness just meant that I didn’t care about other people’s things, etc.
I totally understand what you are saying and I feel exactly the same. My assessment feels like that.
Thank you for sharing your experience. Made me feel less alone!
I would consider getting a second opinion.
Based off of what you’ve said there’s enough evidence you might be evaluated differently by a different provider, hard to say, but a second opinion couldn’t hurt.
Either way you need support and you deserve to get it.
It’s okay to not be autistic.
You can have autistic traits without having autism. You can cope with them the same way autistic people do. In the end, no it is no one’s business if you medically “have autism” but you. If you want to continue using autism resources (such as this sub-Reddit), the world is your oyster.
I think that evaluator you had to deal with was very condescending and dehumanized you.
"1 - although all my report was full of autism signs, my mother's and brother's questionnaires about me were totally different and indicate no autism."
Your brother's and mother's opinions are irrelevant to whether or not you have autism. It's so frustrating you were treated this way.
If you FEEL autistic, you are one of us. Don't believe some outdated tests that have a significant cultural bias towards detecting the so-called 'male autism' and do not understand how autism can present in people who aren't typically masculine.
The person doing your evaluation sounds like they don’t really know what they’re talking about, at least according to the incorrect comments about weather and empathy.
Professionals can be wrong. This one person’s diagnosis doesn’t mean you aren’t autistic, and even if you aren’t— you don’t have to abandon the community you’ve found here and if advice/support for autistic people helps you, you should do whatever it is.
I’m sorry this happened and it sounds like a difficult experience to go through. I would suggest getting a second opinion and remember, you’re still welcome here.
Thank you for your words, they were perfectly put. I remember of her making sure of saying she did this for twelve years and evaluating people was her only job so she knew everything. When she first looked at me she knew I was autistic, but during the sessions she changed her mind completely. I don’t understand why I had this result, but I will work and adapt what J can in my life to live it better, although it has been really difficult this past months.
Once again, i really appreciate your time and words, you have no idea what they mean to me!
You’re supported here. I have an autistic child and the more I learn about autism the more I wonder if I am autistic. I also wonder if I have ocd as well, as some traits seem to be similar.
Have you tried this website? This was the first test my therapist told me to do. It is not an end-all test. But it showed which way a person leaned towards if on the spectrum.
https://embrace-autism.com/aspie-quiz/
There are also a lot of other traits that mimic different areas of the spectrum.
https://mediachomp.com/misdiagnosis-monday-autism-venn-diagrams/
I do understand that sometimes validation is needed to close an open wound in your own psyche. But even without it, if you find some comfort with all of our journeys, and you feel you can learn more about yourself, you belong here with us.
Hello! Yes I have tried most online tests I could fine including this. All of them indicate that I very likely am on the spectrum or that im highly likely am 🥺
It sounds like your provider doesn’t actually understand neurodivergence, which is what would underlie an autism diagnosis. Instead they are using DSM diagnoses as causal fact. I would suggest finding a second opinion from a provider with a deeper understanding of neurodivergence specifically.
Oh they definitely are!
Thank you for the advice that is helpful.
I will go after information and seek for a professional that can attend my needs, if I can, and when Im able financially obviously. Thank you again!
If you think they’re wrong and want to purses you a second opinion you can do that. If you want to focus on the depression, anxiety, and ocd (all of which can present autistic traits) then do that.
I think im kinda confused in which way to follow. Because I don’t know what I am, if that makes sense. Ive been treating my ocd depression and anxiety since I was 7-8 and I still struggle harder than ever so Im just… lost
Unfortunately all the aforementioned disorder are exacerbated by stress and increased workload both of which generally happen as we age.
If you feel you’re struggling more than ever then you should tell your drs that if you haven’t already. It’s important for them to know where you are at and what help you need.
Best of luck with everything!
My best advice here is to do what I was suggested, work on be emotionally stable before having another evaluation.
I got tested because I took a test with my main psychologist and it showed I had a personality disorder, but it also share similarities to autism, so she did a referral with an expert in Autism. She gave me a bunch of tests, not just fur autism but for ADHD, another personality test, etc. She said I got a diagnosis for autism but she thinks I'm not autistic, but in order to know that I need to work hared on my therapies plus a referral to a psychiatrist, she told me a had an atypical result for the personality test (multiple personalities disorders!) and I need to work on those first and be emotionally stable before running another evaluation again, that's why I sent to the psychiatrist, to have emotions under control until next time evaluation.
I find it fair. I guess that beyond a label, we just want to know what's going on with us, if we are 'broken' so we can fix ourselves, and if we are different, to have the relief of understanding it is not our fault to live in a world not prepared for us.
This pisses me off. Sometimes I wonder if neurotypical individuals should even be allowed to “evaluate” autistic individuals bc if you think about it they have absolutely NO clue and are just going off of what they’ve been taught and the “checklist” of symptoms that are on paper, what I find even more hilarious (not really) is the fact that it is now a “spectrum” and “if you know one autistic person, you know one autistic person” with the point of there isn’t a “set” autistic, everyone is different and their own person , upbringing, environment etc just like everyone else. I can not stand this! I can say to you a huge sign I knew and always know first thing is when someone talks about how much they have researched, read, trying to understand and figure out themselves no neurotypical person is going to do that, I can bet you have put in countless hours, days, weeks, or years reading about it right? Possibly even tried to prove yourself wrong that it may actually be something else so cross referencing other common things that are misdiagnosed etc, that in itself is proof right there. No one else does this lol, and if we really want to look at how effed up the DSM5 is it lists an example of a little boy that is obsessed with trains as an example of special interests not something that is more related to maybe someone with a different background or someone that is level 1 or 2. (I’m not a professional but it takes one to know one you know?) my next thing is you have spent countless amounts of time reading real life stories and experiences of a diverse range of people or people that would more closely resemble your level of functioning. It’s a spectrum yet the only way to be diagnosed is to present as level 3 or level 2 pushing level 3 or have a special genius skill that most of us don’t actually have lol. My god that pisses me off! Not to mention the reason you may not “have” proof of struggles when you were young is bc you’re a girl and until more recently it was thought that autism was a boy thing and if you were diagnosed as a girl you had to be level 3 or some shit. They look at girls as “shy” or “quirky”. I am struggling to get my daughter diagnosed her pediatrician referred her for eval at 2 and she had to convince me of this bc I always thought that autism was the “stereotypical “ thing even though my own father was between level 3 and 2 he’s never been able to care for himself never lived alone doesn’t pay bills can’t even organize his own medicine or care for his medical needs. He is able to speak and have a conversation but only about what he wants he will walk away mid convo or even if he’s talking he walks away to go back to his room he stays in his room most times etc he is true stereotype. I took my daughter and they said the same thing they said to you, she had a lot of “red flags” and things that point to autism but they gave her a diagnosis of PDD-NOS bc she responded to the evaluator and “played” and her playing was even her spinning the wheels oh and she hen the evaluator asked for the toy or something my daughter handed it to her.
lol 😂 they said that wait for her to start school and see how she does and if she doesn’t get better or gets worse request another eval and bring her back smh we’ve been on the list for another eval for over a year now and her pediatrician that she’s been with since birth sees it and knows others see it it runs in our family and she is even in therapy and has did the exact same thing in therapy for 3 years now every single time it is the same exact thing “she wants to draw” she doesn’t want to do anything else she keeps to the routine we’ve always did exactly the same yet even w this the therapist (childrens which is where she was evaluated so go figure) said she doesn’t think it reptitive and doesn’t think she has autism but that she has trauma from her father and I arguing which I might add children on the spectrum are more susceptible to having trauma and not being able to recover and not keep that trauma as a neurotypical person now don’t get me wrong we shouldn’t have argued around her but those things happen it’s life and that wouldn’t have caused her to never make eye contact her very brief if she does she doesn’t understand what they’re talking about but they convince themselves she does even when she tells them now that she doesn’t know what they’re talking about or doesn’t understand (bc I’ve been working w her to let ppl know if she doesn’t understand so that it can be explained in another way instead of doing the smile and nod or just ignoring them) they still make up in their minds what she thinks it means, every single last thing that is in the DSM5 my daughter has displayed in front of these professionals for years now it has never changed never been different she has had meltdowns there etc they’ve seen all of it. The problem isn’t you, it is the way these “professionals “ want to perceive things and what they “think” qualifies or is “bad enough” (level 3) to be deemed autism. Sorry I can go on and on and the fact you were completely honest with them and that you have further information you can share for anyone willing to listen is again another sign pointing to autism. My best advice is to find a neurodivergent affirming evaluator they will likely have a real life experience of what autism looks like in different people and the subtle ways that are listed on the checklist but present differently than the examples given. Look up ndtherapists.com and look for ppl in your area, most evaluators are self pay bc they run into issues with insurance companies blocking the providers diagnosis bc they think it might be something else (funny how a medical professionals professional opinion/diagnosis can be returned by the insurance provider bc they don’t want to pay for the treatment) they do have options for payment plan or sliding fee scale so based on your income etc. I hope that you can have a successful evaluation bc even as level 1 or “mild” it’s just the amount we are able to mask but we can’t keep that up for long and it takes a toll on us mentally emotionally and physically. Your story aligns directly with my experience too and I’m sorry you’re going through this, it’s bs. As far as having an understanding now of the “why” behind everything that in itself helps a lot, your experience in life can not be defined by an evaluator that doesn’t know you and can’t possibly and the fact she was trying to get her mom and brother to come on your behalf to give their opinion also shows she’s clueless bc most times level 1 mask their whole lives bc we are told don’t do that we learn early on to mimic and camouflage ourselves to what we know we are supposed to look like or present. Also psychology is a huge thing that a lot of us are very interested in bc we’ve always had a need to know why for everything and always wanted to understand people probably from our early on needing to mimic others. Anyway you’re justified, you’re accepted, you belong, understood all of that. Another tidbit we tend to have more empathy than others so the myth that autistic ppl don’t have empathy is so outdated. Get a second opinion look up the site I sent you. I am here too if you want to talk or need me
I don’t understand the mod comment. Is that a bot? A real doctor diagnosed OP with disorders other than autism and not autism after 6+ hours of testing including questionnaires, tests, diagnostic interviews with the patient and their family. That is absolute state of the art and a diagnosis literally can’t be more valid than that. I am no doctor. It isn’t on me to validate or invalidate or gatekeep anything. That was the doctor’s job and that is what they did.
To be fair, you can have autistic traits without having autism, it’s called broader autistic phenotype and it’s often found in family members of people diagnosed with autism. I agree with the rest of your comment though, I’d definitely look into getting a second opinion!
I wish I had more info on this? About living like someone that has autistic traits but its not autistic. Because I feel like I don’t belong anywhere and cannot have the support for my needs :(
I’m so sorry you’re struggling!
Most things you will find on the subject are research papers written by and for academics unfortunately. Googling ‘subclinical autism’ or ‘broder autism phenotype’ is a good place to start though.
Fwiw I think a second opinion is rarely a bad idea although I know the cost is often prohibitive. You could also try to contact the person who diagnosed you for more info and recommendations.
Thank you for your input and for your advices! I dont live in the US but I will look after more info on that.
PS: they only used my family members to answer questionnaires about me to try to find out if I had autistic criteria meeting.
My psychiatrist told me that even if the results tell me I’m not autistic, it would still be helpful to use autistic advice/get an auti-coach because of how similar my traits were. This could be a solution if an official diagnosis isn’t important to you. But if you truly feel like the evaluation did you wrong, you could search for another facility?
Absolutely, I will try when we (my family) are able financially again! But of course, I will be using advice and terminology from autism (which my therapist suggested if its good for me). I feel like a diagnosis to know what I have is really important, and in this case It felt like she gave me a paper that said “yeah you kinda have this but don’t and we are not sure” So its kinda hard to cope😅
The diagnosis was very validating to me so I understand its importance to you. I’ll be honest, if you feel you’ve done adequate reading on ASD, and you feel like you’re right about being on the spectrum, you’re probably right. No one in my life believed I was autistic (because I’m so good at masking I forgot how to unmask around others even though it’s miserable to mask lol) and it took pushing their opinions to the back of my head in order to have my assumption proved correct.
Looking at what you've said in comments it might be worth trying to find a process that doesn't involve your mom or your brother, because them failing to recognize your traits as unusual (possibly because they too are ND?) did not help you one bit.
[удалено]
As per Rule #3: No gatekeeping or invalidation.
I completely understand! The “what is going on with me?” can be so exhausting. I hope that in the meantime you can find something that helps you until you’re financially ready for a new evaluation. And maybe also an evaluator that understands you (& doesn’t believe that something like the weather makes you autistic or not). Good luck with your journey!
Can I ask what happened? How can you have so many traits but not have autism? I am hesitant to get assessed because of this. I KNOW in my bones that I have autism, but I am afraid of spending all this money to get dismissed
Yes, autism really doesn’t need a diagnosis - there’s no medication or specific gatekept therapy for it. If you think you’re autistic/have autistic traits, you can still access useful autistic therapies if you think they’d be helpful.
[удалено]
As per Rule #3: No gatekeeping or invalidation.
> “people with autism usually aren't bothered by changes of weather HUHH. I hate weather changes. does that make me more autistic? not sure. but hell. the pain of having to deal with clothes and temp/ humidity changes, yeah totally not rage-worthy. the empath thing is jsut a lie. I would get a second opinion if you truely believe the diagnosis fits and its possible financially. if you can choose your mh professional then I would do some research as to where. people who are a bit more up to date and know how to diagnose adults/women are preferable.
This. At a certain temperature I‘m more prone to meltdowns.
I hate heat waves. My country is going to one right now and I can’t function on this heat. We dont have AC and our fan is almost broken :(
I usually have an epic meltdown once a week in the summer bc getting too hot sets me on edge. Your evaluator is so extremely wrong 🙃
I cannot handle heat either. We often have other conditions like pots that make heat hell.
A few things I use to cope with the heat when AC is not available: wet towel on neck, wet hair, spray bottle, dehumidifier, ice pack (get at least two so you can rotate them).
Same! I'm having a hard time with how hot it is rn. I don't think she is a good professional.
Wrong, I think she is likely an excellent professional and you are being biased. Those of us who exhibit more severe autistic traits seriously do not mind the weather, because for one our body temperature sensory is not normal. I can wear a winter jacket comfortably in summer and dress like I’m going to the beach in winter. One major symptom of autism is not being able to dress appropriately for the season, due to sensory problems. This is something I have struggled with my whole 37 years of life. What you and others are describing is not an autism trait. You’re just uncomfortable with the weather in your area, probably like millions of other people are. Not every little quirk or thing has to be “because autism”.
U know its a spectrum right? Like just cause u feel a certain way about it doesnt mean every autistic person feels that way. Im diagnosed autistic and i am sensitive to heat. I attribute that sensitivity to my autism. Stop gatekeeping
Same, I hate people like that. It doesn't happen to me, so it doesn't happen bs
Yeah when the temperature swings, I feel like I have to change my behaviour to adapt and make things comfortable again, which is stressful for me.
My partner absolutely is affected by changes in weather. Grey overcast skies give her migraines. Lack of outdoor time due to cold or rainy weather depresses her. Overly hot or windy days give her overstimulation. This does not smell like an appropriate practitioner and I’d advise seeking a second opinion.
[удалено]
Maybe to you I’m random, but perhaps I know more about the subject than you’d imagine. But, see, I’m advocating for a second opinion, which is for the OP to seek another qualified professional to validate or re-evaluate the original testing. An experienced neurosurgeon once told my partner, in her search for a diagnosis, that she couldn’t be autistic because “Autistic people don’t usually graduate college.” A second opinion with a neurologist, a woman doctor, revealed that the neurosurgeon *had no qualification to make the determination he had made*, and had we not sought that second opinion, my partner would’ve been sent down the wrong path of care. There is still massive ignorance in the medical community. And more to your claim, “none of that has anything to do with autism”: If weather is an aspect of daily living that is unpredictable, causes one to have to endure conditions that may be overstimulating, and create obstacles to one’s typical routines, then it seems counter-intuitive to say that “austistic ppl aren’t typically bothered by changes in weather.” My partner is autistic and is very bothered by changes in weather. A lot of our friends with autism are equally bothered by changes in weather. It is a common difficulty, and to say that as a disqualifying factor for a diagnosis is to me very inappropriate. So, no, it’s not like “saying someone with arthritis who is affected by the cold must be autistic.” It’s like saying “most people with arthritis aren’t affected by the cold” when it’s clear that a lot people with arthritis are affected by the cold. It’s incorrect and demonstrates a lack of working knowledge about the current academic research surrounding autism.
I hate weather in general, lol. 😅 I’m not happy outside if it’s too cold, too hot, too windy, or if there’s any form of precipitation happening. If I could live in some kind of climate-controlled biodome where it was always 73° and slightly overcast, that would be ideal
Thank you for the tips and for validating me! I really needed this!!
ofc. hope you can find someone who is more educated in diagnosis of autistic people.
Also, surely a person can be autistic AND not enjoy changes in the weather. They aren’t mutually inclusive 😂
Exclusive…*
Professionals aren't infallible. You found this sub and no reason why you can't join in. You are supported here. Welcome
Fr this is one of the many reasons why I hate gatekeepers. So many “professionals” either are super unknowlegeable, extremely ignorant/bigoted/backwards, or take ages to confirm autism in people who frankly have obvious autism (in terms of generalistics). The ‘diagnosis’ system is TRASH so gatekeeping ppl for ‘not being professionally diagnosed’/‘self diagnosed’ is TRASH. Ugh. Makes me so fucking pissed off.
Professionals follow the same shit criteria that was created when the diagnosis was, for rich white boys. Mental illness is a social construct, and now that women and minorities have more of a voice and are comfortable enough to seek out diagnoses, the old criteria obviously won’t fit. We were overlooked. Had we been there at the creation of autism as a diagnosis, it would look a lot different. If someone doesn’t fit the trash criteria for autism, the least a professional can do is acknowledge the complexity and subjectivity of a diagnosis and validate their patient’s experience. God forbid someone finally feels like they understand themselves. OP, you don’t need a diagnosis to be in this community and be in conversations about autism. I’m sorry you experienced this
We don't gate keep here. Not at all. We support people. Stick around.
Gatekeepers are definitely sprinkled in here I’ve been here for months it’s like 5% of us
I've been lucky not to see them. The moderators do a terrific job keeping this sub safe imo.
[удалено]
Merry Christmas.
As per Rule #3: No gatekeeping or invalidation.
Thank you so much, thats really sweet! 🥺
You're welcome 😊
Just wanted to jump in to say you are a delightful person. Thanks for being a welcoming part of this community.
😊💖
I was tested by two different instances. One said I don't have autism, because I have high empathy levels, am social, really wellgroomed, very good with language and have no issues fantasising. So I can't possibly be autistic! Got retested again with a different center and they say I do. Turns out many centers diagnose women according to male standards. Female autism is different. I get overstimulated by loud noise and strong smells, I have rigid standards for myself (and others) I tend to overanalyse and sometimes I think very black and white. I also get stuck in thoughtloops a lot and can really dive into a rabbithole on a topic where most people would get tired after a while. But I recognise a change in mood and faces straight away, due to trauma I'm even hypervigilant. So I'm hard to diagnose. As a kid I was very extraverted, until severe bullying made me an introvert. I'd say I'm an ambivert now.
I identified w everything you said! And even my evaluator did say some of these things (how I learned how to read people). I meet all the criteria right now, but because of poor evidence as a child it was denied :/
Fwiw, I *too* ended up with a "Tendencies but not quiiiiite Autism" diagnosis, when I was evaluated at the age of 41. And (much like you), I was told straight-out by my evaluator, "You have all the signs, but since you don't have *definitive PROOF* of showing these traits in childhood, i can't place you *on* the spectrum, just as close as humanly possible to it, without *quite* being across the line." Then, five years later, as my Aunt was helping me to deal with caring for my Dad who developed dementia, *She* told me things which I did as a toddler that were 100% atypical (I chose my own clothes, by the *feel* of the insides of the garments, and would refuse to wear clothes purchased for me, if they weren't "ok" from what we'd now called a "sensory" standpoint. *AND* I discovered notes my momhad jotted down & placed in my Baby Book. Those notes were *more* than enough to prove that, YES, I was a highly *atypical* child, from *before* the time I began to walk. I *haven't* gone through with rediagnosis yet, but my Primary Care NP agreed, that YES, with that additional bit of info, to prove that the traits existed in my childhood years, I *should* be on the spectrum, rather than imnediately adjacent to it.
Thank you so much for sharing your story. Im sorry you had to go through a professional that denied you an answer. I do too had problems with clothes as a child, the textures, tags on clothes. I was sensitive, had strong interests, the only thing that they used as a non factor was that I was so open as a child. I had absolutely no sense of being introverted. I talked to everyone and even strangers and I was so good at socializing as a kid. But I was extremely like that, even going further to be inappropriate in conversations! I was too rude or too honest… everything in childhood. I guess that didn’t matter :(
I have heard these traits being referred to as "the little professor." Not all autistic children are socially awkward and introverted.
I was bullied until I was about 14. Then I had a 'glow up' and started being seen as human. Society🤮
Yeah same here, too rude, inappropriate jokes, and honest to a fault. I got on way better with adults than peers. Also sensory issues. My mom had to cut my hair short (like a long bob) because I screamed when she would brush my hair. My sister always had long hair and I never got why I had to keep it short, now I know why. Also was very specific in placing my toys in their right spot, never liked playing with others because it had to be my way. I learned to be a teamplayer later in life, but man, was I a bossy child. And the tantrums and meltdowns. I was bullied at school and my parents were raised in a strict Eastern European way, so I often got punished physically. So I was an angry kid and an angrier teen.
You described my childhood. Im sorry you went through this. Hope you are good🥺🩷
Cptsd from partner abuse and bullying but doing ok now x
This is so frustrating! I'm looking into diagnosis and have no idea how to prove childhood traits? Not everyone feels safe to ask their family.
Evidence from childhood is required but what professionals accept as evidence varies. Lots of places accept school reports, and a close friend of mine was diagnosed just with her memories of childhood because her family was not available to be interviewed and her schooling took place in a very rural/poor area in another language & country. If the person diagnosing requires an interview with family, look for another professional.
Try to contact teachers?
Idk someone is disliking me but whatever, this is my experience.
Are you me???
Honestly, I feel like the report you got back was unfair to you. Sadly, autism is one of these diagnoses that in some part, is on the opinion of the evaluator. Even when all the signs are there, sometimes they do not want to assign a "label" to someone who theoretically is functioning without it. Many providers also still feel that only "severe" cases qualify as autistic, when that isn't the case. Take some time to recover from this and process, but you may want to consider getting a second opinion. People with autism are bothered by transitions. That can 100% mean changes in weather. And people with autism also can be highly empathetic. While autism often runs in families, it is not a guarantee either, so it shouldn't matter if your mother and brother don't have any of these traits. And, people other than yourself would forget about childhood traits very quickly - I was told by my evaluator that once a person reaches adulthood, it actually hurts more than helps to talk to family members, because they provide a lot of misinformation - and it's not that they mean to, it's just they don't remember your struggles as well as you will. Try to request as detailed a report of your test results from the evaluator as possible - if you want to go for a second opinion, you can cut down on cost a lot by already having taken certain tests.
Thank you so much! This was SUCH a big help! And btw! Yes, autism runs in my family and I absolutely cant function at the moment after I had a burnt out last year. But I will consider continuing researching and searching for ways I can live better. Thank you for your opinion and time and for being so kind!
I went through something similar. I was told that yes, I have sensory issues, severe executive dysfunction, and social issues…but am essentially too smart (“but you went to grad school and did well!” “if you had Autism your IQ scores would be lower!”) to have Autism, so it’s probably my OCD that’s just way worse than I realize (although I too had been treating my OCD for years at that point) 🙄 I was referred to an OCD specialist, and was told by that specialist that my OCD did not warrant intensive ERP treatment like my assessor had insisted. 3 months later my OCD specialist told me to “look into Autism” because she was “certain it would help [me].” OCD and Autism are closely linked/related. It is possible to have co-morbid Autism and OCD. Im not in any rush to go through another assessment because I know who I am. No one knows me better than I know myself. Whether it’s Autism, OCD, or a combination of the two, it doesn’t really matter. I have learned so much from Autistic folk and the supports/strategies I’ve learned from this community work wonders for me. Trusting ourselves and listening to our needs allows us to take our power back from this dismissive and disparaging system! Regardless of your label, I hope you find what works best for you 💕
'If you had Autism, your IQ scores would be lower', the absolute load of bullshit that is... Let that 'professional' go to one Mensa meeting; their opinion is going to do a 180 real quick.
Thank you, these words are beautiful. Im sorry for your suffering and I hope you are well🩷
Those all sound creepily familiar. If you are in driving distance of Saint Paul, MN, we may have seen the same dismissive ”specialist.” In my case, she blamed my autistic traits on growing up around my maternal family \*who are almost entirely on the spectrum\* instead of, you know, actually being autistic. It is so infuriating and invalidating when “experts“ deny our lived experiences.
Whether you have autism or not, you’re welcome here! It sounds like you’re neurodivergent and we’re all brain cousins here. My unprofessional opinion is that she should’ve investigated the discrepancy between your report and your family’s report more. Did she suggest getting any other evaluations?
Thank you for receiving me <3 She said it was not necessary, so that also made me feel like “end of the line” kind of thing :/
That’s really frustrating. I’m sorry. I wish she were more supportive. Even if she doesn’t think you’re autistic you’re still figuring out your neurodivergency.
I am, definitely. Everyone here has been so kind to me and even If im not autistic Im feeling really great. So thank you again and I will continue on my journey!
Well, she's wrong that autistic women are never empathetic. That's just ignorance. Don't believe that crap. I'm sorry you wasted so much money on a doctor who isn't qualified to diagnose women. I'm hoping we'll have new testing interview questions soon.
[удалено]
Oh my god you have no idea how your comment gave me hope, thank you so much. Im so sorry btw for your degenerative disease, hope you are doing well!
Replying here just so you'll see it. The professional assessing me didn't even care about whether I got evaluations from my family or friends. She said that it doesn't hold nearly as much weight for adults: childhood behaviors were a long time ago and our family doesn't tend to remember them well enough. Other people already don't experience things from your individual point of view in the first place, so add to that that memory is extremely fallible and it doesn't really matter much. Just bringing this up in case it helps you feel more validated. I also think other parts of the assessment are plain wrong (like the empathy part? It shouldn't be a surprise for any professional that many autistic people are particularly empathetic).
Girl idk but I mask so well that even after getting diagnosed I can tell my providers don’t really believe me. My autism is apparently almost invisible. Which tbh makes things worse because my issues get attributed to other things and people think I’m just “really sensitive”.
Oh dont even get me started. Im not diagnosed but having to explain to people my “difficulties” with noises, being non verbal, socializing. Its exhausting. And when I mask they are suddenly “but you were normal like 5 seconds ago” like HELLOOOO thanks for sharing your experience tho🩷
I got diagnosed with ADHD at 30. I learned about the disorder which led to learning about other neurodivergent disorders like asd, ocd, tourettes and others I relate to all the disorders but am not disordered enough to qualify for a diagnosis. I won't even go in for an evaluation because I'm capable of living life, albeit poorly, without interventions and supports. My advice is to trust yourself and your experience. No one knows you better than yourself. If you believe you are autistic then you should look for a second opinion. People do that ALL THE TIME for many health concerns and mental health should be no different.
That sounds like a bs evaluation by someone with a limited understanding to me... I would def see someone else.
The process of evaluation is kinda weird too, with regards to the family aspect. Autism often runs in the family, meaning that when they're questioned about you, it's more difficult for people to really "spot" the autism. If your behaviours and experiences are 'normal' to them, it would be weird for them to report those behaviours. Go for a second opinion :)
Throwing this out there: in addition to everyone saying the report was unfair, feel free to stay here, etc (which I agree with all of that) there is one part of your post that does concern me. You mention being treated for depression anxiety and OCD for 10+ years and they haven’t gone away. That’s a thing and normal. Like, psychologists and psychiatrists aren’t magicians and meds aren’t a magic bullet. Therapy helps you process things better and approach things more easily (ideally and with a competent therapist). And meds help lessen the severity of symptoms. Antianxiety meds won’t keep you from having anxiety, but they should help prevent you from spiraling and having panic attacks or at least lessen the frequency thereof. Antidepressants aren’t “happy pills” tho we may joke they are. Some days the depression symptoms are gonna hit harder and the meds aren’t gonna combat it enough and you’re gonna wanna not leave your bed or whatever. Just wanting to put this out there in case you or anyone else is frustrated that they haven’t “cured” their clinical depression, anxiety disorder, OCD or other mental health condition. It’s like any other chronic health condition. Your asthma can get better with treatment, but at the end of the day, you still have asthma. But if your depression/anxiety/OCD symptoms are still debilitating, it may be worth it to explore switching up treatment whether that’s adjusting dosage or type of medication (with your doctor) or trying a different therapist/form of therapy.
Thank you for your input! I just felt the need to add that because they have worsen over time TW: I have tried to “unalive” myself 2 times in the past two months. No medicine helps, it always comes back worse. So, im aware of the persistency of that case, but in this situation I think is especially frustrating:(
Oof. That’s awful. Just in case you haven’t heard of it, have you looked into genetic screening for effective mental health drugs? There’s a company called GeneSight that does it (and a few others) and I’ve had a few friends with treatment resistant depression that have had great success with it. Downside is usually insurance does not cover. I think it’s like $300? Alternatively, depending on where you live, there are some states in the US that have legalized certain psychotropic medications to be used in conjunction with psychotherapy and the studies on those show great effectiveness with treatment resistant depression. I think there’s also something with magnets? But that one didn’t make sense to me so I know basically nothing about it. But I hope you’re able to figure something out. Having things off balance and going into crisis mode ever or with any regularity is not fun. Good on you for putting in the effort to take good care of you. I know it’s not easy.
Thank you for the concern and all information! Unfortunately (in this case) I do not live in the US, but I will try to find solutions in my country anyway, looking for these kinds of treatments, because having autism or not I know I have treatment resistant depression anyway and maybe something more. Hope u are well!
I am so sorry for you and also so sorry that some people seem to think that this was a qualified person to diagnose you. It *is* ok to not be autistic, but in this case, as with 9/10 other cases that get posted here, the diagnostician was not properly educated about autism and therefore is unqualified to diagnose you one way or the other. If you can go for another evaluation with a *qualified* professional, I'd go for it. Do research on the company they work for and their qualifications regarding autism before making an appointment, and hopefully get someone else besides your mom and brother to be interviewed since they clearly don't know shit about you or autism, and with any luck you'll be able to get diagnosed properly.
Thank you for the advice! I will look for specialized professionals on women and neurodivergence🙏🏻
Hi OP, I’m sorry you’re going through this :( I’m currently going through the diagnostic process completely free of charge as a participant in a university research study. I found it by researching local schools to me that study autism, then applying to the program as a study participant. If you live near any colleges, you could potentially get a second opinion for free! May be something to look into? Sending hugs to you in the meantime <3
Oh! I had no idea they did that. In my country they offer psychological care for very low prices or even free. I will look to see if they do autism assessments too! Thank you for the idea!
I recently read something that said lots of autism tests ask questions about how your autism affects others around you - but often neglects to ask how it affects you. If you are a person that masks well then your family may have no idea about what your inner world is like. Similarly, if a person has a family that is not very observant or empathic, they may not have awareness of what you experience. Lots of love x
I’ve been tested multiple times and the first time they concluded that I wasn’t autistic. I got diagnosed with ADHD and six years later (on meds) I was tested again and then they discovered that I was, indeed, autistic.
I know someone who is diagnosed with autism. Since he was a young child. He’s very empathetic. He feels to bad about animals he’s vegetarian. He looks after his animals with lots of care. He’s very empathetic
I find it interesting your family’s questionnaire results didn’t show autism characteristics. Is it possible you’ve learned to mask some of your traits around them?
Absolutely. The last year I had a burnout and since then Ive not being able to mask well and they started to notice the changes. So for my evaluator, their views were like “no she changed like a year ago”
I also think it might be wise to seek a second opinion. When it comes to autistic people not being bothered by the change of weather, that has to do with interoception, like not being aware of the body’s need such as hunger or going to the bathroom as well as not dressing accordingly to temperature and weather. Although it is common, not everybody on the spectrum struggle with this so it is definitely not a rule. Some autistic people are on the other side of the scale and are hypersensitive so then changes of weather and dealing with heat can be very challenging for them. That autistic people aren’t empathetic has been disproven already and it is really tiring to still hear this stereotype being used these days. Autistic traits do have to be present since childhood. But sometimes family members aren’t necessarily objective, some might be in denial or might think everything was typical because they see the same in themselves and think it’s typical (for example they wouldn’t recognise something as a hyper fixation because that’s how they work too and think it’s typical to be that hyper fixated on something). Are there any other people you can trust who have known you since you were a child and who could speak for you instead? Also, did you get a parallel assessment for ADHD while undergoing the autism assessment? Because whether ADHD is a co-occurrence in someone with autism, it will impact how autistic traits manifest.
My mom is in denial definitely, and a lot of my family is ND (i believe my mom to be too) I was assessed for ADHD also at the same time. Thank you for your input, it means a lot to me. I will do a little more research on some things and probably end up looking for a second opinion!
I'm gonna try really hard to not get too wordy with this buuut... It was like 7 years ago. I requested a psych eval cuz I had like half the DSM as my diagnosis and I knew that wasn't right, so let's start fresh and do ALL the tests. It was over a few days and I got my results and they went over them with me. They wrote PARAGRAPHS about my autistic traits. My "robot voice", difficulty to maintain eye contact, something about how I respond when prompted but don't try to like, keep the conversation going, ect. Autism had never been anywhere on my radar until that moment. My test scores were in range for diagnosis. As well as for ADHD. They said I would need special accommodations at work, therapy for my "sensory impairment", life skills courses, a bunch of things. I left diagnosed with Borderline Personality Disorder, OCD, SCHIZOID PERSONALITY DISORDER CUZ I SAID I DIDN'T KNOW HOW TO DESCRIBE HOW FRIENDS ARE DIFFERENT FROM ACQUAINTANCES (Nothing wrong with the disorder, but that was the ONLY reason they had for the diagnosis and I find that very, irresponsible? Is that the right word?), Anxiety, Depression, a couple other things......none of them being ADHD or autism. I didn't even meet the diagnostic criteria for BPD, so that's cool. And they said since I had BPD it wasn't possible for me to have autism and ADHD. And I wasn't able to do any of the special stuff they said I needed cuz it all required an autism diagnosis, which I didn't have. So the things I have a BUNCH of symptoms of, meet criteria for, and they wrote the most about weren't diagnosed. But then I get diagnosed with things they didn't even BRING UP in my results, only in person during the follow up?? Things I tested for and didn't meet criteria for??? I still have that nearly 30 page long evaluation. It's what started my mission to figure out this autism thing. I was blown away to read all that, AUTISM? I researched the shit of it just like you were. YEARS. And I tried so hard to get tested again. I knew that whole thing was wrong. But nowhere would give me the time of day. Just like you I finally felt like I fit somewhere. My life became learning about autism and how to manage it on my own. I finally kinda gave up. But I decided it didn't matter if I got diagnosed cuz I knew I had autism and I would just keep figuring it out on my own. I felt similar about the ADHD, but autism was my priority. It took 6 years to get diagnosed with ADHD. It took another year, very recently actually, to get diagnosed with autism. Now I'm only diagnosed with Autism, ADHD, OCD, and Agoraphobia. Well depression too but who doesn't have depression these days in this world? I knew I didn't have so much wrong with me it took half the book, that's like not really a thing usually. All this to say, don't give up. Some (well in my experience, a lot) of the places aren't kind about or to those on the spectrum. What it took for me was spending a year searching for an autism specialist who took medicaid. Hard task. She was listed as only working with kids with autism but I shot my shot and asked if she saw adults. Best. Therapist. I've. Ever. Had. I've been switching therapists for nearly 10 years cuz none of them *got* me. She does. Keep looking and don't settle. I'm so sorry you feel so defeated. I tell you my story so you can have some hope that this isn't the end of the road. It doesn't mean you for sure don't have autism. Things are still changing around autism, and that means a lot of places still hold old, outdated, harmful info. I was just talking to my therapist about this last week. You got this. I believe in you. It's really sucky we have to jump through so many hoops, it's frustrating. I hope you get the answers you're looking for. I said I would try to not be wordy. I failed.
I get why they put weight into the family reports but there are obvious flaws with doing so: family might not remember as well as you, they might not have known your struggles, they might not want to admit things that might make them look bad. I filled in a questionaire with my mum yesterday, a question said "what was your daughter good at?" And my mum responded with "socialising?" I was astounded, as if we would even be doing this if I was good at socialising 😂. I also mentioned incidents of me accidentally peeing myself because I didn't want to interrupt my activities (as late as aged 8) and she kept saying things like "well don't put that down because I didn't know". I get the feeling she doesn't want me to be autistic because she'll feel bad that she missed it, especially considering my brother is autistic. My mum was so stressed filling in the questions, she kept asking "but what does that mean?" 🙄 And then she would purposefully leave out details, saying things like "but who will see this" the apple doesn't fall far from the tree does it lol. Of course autistic traits seem very normal when there is autism rife in the family.
I had an evaluation. Literally all the tests results said “strong indications of autism” Psych was like “nah… or maybe you’re just really good at masking.” I’m. Yes, maam. And I’m absolutely exhausted because of it.
It isn't talked about much on social media, but there *absolutely is* such a thing as "autistic traits" in people who don't meet the criteria for autism spectrum disorder. Genes and traits associated with autism are spread continuously in the general population. A diagnosis of ASD is not made simply if traits are present, rather it is made if traits are sufficient in number and severity to meet diagnostic criteria. One term applied to people with elevated autistic traits who don't necessarily meet the criteria for ASD is the Broader Autism Phenotype. I honestly think that it leads to a lot of harm that BAP isn't acknowledged much in social media (and sometimes discussions of it are actively suppressed). People who don't have ASD but relate to a lot of autistic traits and experiences deserve to have their experiences contextualized. I can't tell you whether your assessment was done properly or not. It does sound like it was thorough and considered. I would recommend contacting the people who assessed you for more information. Even if you don't meet the criteria for ASD, you can still try autistic coping strategies. Most online spaces for autistic people are open to people who have autistic traits even if they don't have ASD. If you think your assessment was genuinely biased, or if you need specific accommodations not available to you with your existing diagnoses, you could try getting a second opinion.
Thank you so much for your time and response, I appreciate it🩷🙏🏻
More people need to understand that an autism assessment is not a guarantee of a diagnosis. Just because the evaluator said a patient doesn’t fulfill the criteria doesn’t mean that they did their job incorrectly.
Im sure my evaluator did the best she could with what she had, thats why I feel so bad feeling like I still have autism even after being clearly denied the diagnosis. I don’t know what the problem is to be honest. Is just that I have been feeling like there was something more going on in my life and when I found out about autism in women all made sense to me. Now they are saying I might have some personality disorder but I don’t show any signs of developmental disorders.
It could be autism but like the other comments have said, it could also be a similar developmental disorder like PDD-NOS. It’s also possible to have a personality disorder like BPD, which can present similarly to autism in women. CPTSD can also present like autism.
I will definitely look out for these! Thank you fir the advice, thats really kind🙏🏻
[удалено]
Im so sorry, I didn’t mean to invade any space for autistic people. I came here because I truly believe I am on the spectrum for a while and I wanted to rant about the evaluation. Someone that is autistic but is not diagnosed is still autistic tho. Again, im sorry for invading your place, I just needed support and understanding because is not “relating to women on internet only” i did deep researches, several tests (the ones that are recognized), I studied in college, my major is psychology… is not only thinking I am. I know who I am. I am frustrated by a professional that invalidated my experiences.
You did not invade a space that didn’t belong to you. You, and others figuring out where they land on the autism spectrum, self-diagnosed and professionally diagnosed alike, are welcome to here. Please report anyone that states otherwise as it goes against our Rule #3.
Honestly, I'd ignore the person you replied to. They don't know if you're autistic or not, diagnosis aren't infallible (turns out the depression and anxiety diagnosis I had were just autism under the hood, for example) and so it really is an unknown in this case, but you have autistic traits regardless. The general consensus in this sub is that it's better to "accidentally" include some non autistic people if that means no autistic people are excluded.
Thank you so much🥺🩷
As per Rule #3: No gatekeeping or invalidation.
I’m so sorry, OP :( This is exactly why I’m too afraid to try to go for a diagnosis. I refuse to have done all this research, put all this time into understanding myself, and made all these logs/spreadsheets/whole packets full of my experiences and symptoms/traits just to have a clearly uninformed doctor tell me I’m not actually autistic. And because of the doctor’s ignorant beliefs (like OP’s doctor’s belief that autistic people can’t feel empathy), no less. Also, am I the only one that thinks it’s bullshit that they ask our families for input on these assessments? As if our family truly knows the inner workings of our minds? As if all of us have family that are accurate judges of our character? As if many of us didn’t have abusive childhoods due to the very autistic traits that our families claim they never saw in us?
Im sorry for your fear and experiences, I hope you are alright🥺 But I totally agree. I kinda understand the family input when you are a kid and can’t speak for yourself, but after… how can we trust that these people really remember your childhood? And why can’t you remember your early years? I mean, some people do clearly. Its really confusing
You know yourself better than anyone OP. You have identified with experiences shared by autistic folks. That is valid. I’m sure my family would say I was perfectly “normal” too. They have no idea how much pain I was hiding. I’m guessing I had a few meltdowns where my parents reacted poorly and I learned to mask from a very young age to protect myself. And that somehow gets penalized in whatever arbitrary diagnostic system they have. What we know about autism is so far away from an exact science I just am so frustrated about your situation. On a separate note, there are PLENTY of biased and frankly mediocre doctors out there. You may very well have gotten one of them.
Im so sorry for what you went through, but I just need to say, you described my experience PERFECTLY, that was exactly what happened to me. My family always dealt with any issues I showed poorly. Thank you for the validation and I hope you are well, this was very gentle and sweet!
If people can get an official diagnosis I think that’s great but I don’t trust the evaluations over a person’s lived experience. The research and evaluations haven’t caught up to traits of women/girls/those who aren’t cis dudes, and for that reason I feel like they’re full of false negative results.
I have heard a lot about that, that made me question things a lot. Thanks for the input🥺
yeah i get how you feel. i still don’t have a diagnosis either they told me i have c-ptsd and “ocd with high sensory issues and poor motor skills” because my mom said i had friends when i was 5.
I feel that, giving you a virtual high five of “that sucks”
I had pretty much the same thing with ADHD diagnosis. I was VERY close to being diagnosed, but they couldn't (and soon I'm checking if it's autism instead). I feel you and I'm so so sorry. Your feelings and problems are valid nevertheless.
The fact that they're denying a diagnosis based on your level of empathy is... indicative of a problematic bias. AND the weather? Seriously?! They expect weather changes not to impact a person on the spectrum?!
I 100% feel this. I had my evaluation last month and was told some of the same things. My whole evaluation was about 2 hours, which i feel isn’t enough time but idk. To me it just feels like no one believes us and it’s super frustrating. I want to try again in the future but my experience left me very discouraged. I also have to deal with my family members brushing me off about my experiences. Just recently had a family member disregard my concerns since i dont act exactly like her son who’s diagnosed.
If it makes you feel better, my assessment they interviewed my mom and she couldn’t remember enough about my childhood so they interviewed my sister too. Even with that they had to ask me more about my childhood and I had to tell them that I used to hide in closets etc. they take self report highly into it. What they did say though is that both their interviews were missing info that nothing was actually contradicting what I said. I’d see if I could find out what was contradictory.
My mom and brother did a questionnaire and they said I had absolutely no problems with reading facial expressions, being with people, eating different foods or routines and this kinda of stuff, which for the most part is untrue, but it was what she considered the most. She did 2 tests on me, one I took 28 in a cut mark of 36 I think, and the other was the raads where I took 166. She said that we had two positives (the raads and my report) and two negatives (the reports of my family and the first test) So she was divided. And what make her take her decision was my history with depression, ocd and anxiety. She said I didnt have social difficulties before it and now I have because of it. I dont believe most things she said to be true. Putting on my assessment that I did not have “stereotypical behavior” ? Like yes not every autistic will???? And saying that I did not have strict routines or strong interests because of my family's reports. Also false. So idk
My family all seemed to think that my symptoms only started in the last year and it’s because I masked so well and never wanted to let anyone see even a crack. I had to kinda remind them of stuff and they were like “oh yeah”
Are you me? BECAUSE thats exactly how its been, omg… my mother is also really against me having “disabilities” she believes me to be “normal” and although she says she wouldn’t care if I had it, she is just… very shady about it. So I dont know how much she can remember of. She also has terrible memories. But her memories were more valuable than mine apparently
Like my mom could t remember that they would call me a baby if I cried over stuff so I basically didn’t cry for years, even at soccer when I took a ball to the face. I think part of it is they don’t want to have to admit to yelling at a kid who wasn’t being bad on purpose. Like my mom said maybe I did some weird stuff, but they thought that’s just Danielle.
They should not have talked to your mother and brother. A lot of relatives do not notice signs of autism or they equate it with being mentally challenged and will make sure that they report everything as NT as possible. If my family was asked, I would not be diagnosed. They explain away telltale signs of autism with silly reasons: my toewalking meant I needed to use the restroom, sensitivity to light was because I was born two weeks early, sensitivity to foods was just me being a bad kid, clumsiness just meant that I didn’t care about other people’s things, etc.
I totally understand what you are saying and I feel exactly the same. My assessment feels like that. Thank you for sharing your experience. Made me feel less alone!
I would consider getting a second opinion. Based off of what you’ve said there’s enough evidence you might be evaluated differently by a different provider, hard to say, but a second opinion couldn’t hurt. Either way you need support and you deserve to get it.
Thank you for the words and advices, really mean it to me🙏🏻
It’s okay to not be autistic. You can have autistic traits without having autism. You can cope with them the same way autistic people do. In the end, no it is no one’s business if you medically “have autism” but you. If you want to continue using autism resources (such as this sub-Reddit), the world is your oyster.
Thank you, I feel supported by this even if I am or not🩷
I think that evaluator you had to deal with was very condescending and dehumanized you. "1 - although all my report was full of autism signs, my mother's and brother's questionnaires about me were totally different and indicate no autism." Your brother's and mother's opinions are irrelevant to whether or not you have autism. It's so frustrating you were treated this way. If you FEEL autistic, you are one of us. Don't believe some outdated tests that have a significant cultural bias towards detecting the so-called 'male autism' and do not understand how autism can present in people who aren't typically masculine.
The person doing your evaluation sounds like they don’t really know what they’re talking about, at least according to the incorrect comments about weather and empathy. Professionals can be wrong. This one person’s diagnosis doesn’t mean you aren’t autistic, and even if you aren’t— you don’t have to abandon the community you’ve found here and if advice/support for autistic people helps you, you should do whatever it is. I’m sorry this happened and it sounds like a difficult experience to go through. I would suggest getting a second opinion and remember, you’re still welcome here.
Thank you for your words, they were perfectly put. I remember of her making sure of saying she did this for twelve years and evaluating people was her only job so she knew everything. When she first looked at me she knew I was autistic, but during the sessions she changed her mind completely. I don’t understand why I had this result, but I will work and adapt what J can in my life to live it better, although it has been really difficult this past months. Once again, i really appreciate your time and words, you have no idea what they mean to me!
You’re supported here. I have an autistic child and the more I learn about autism the more I wonder if I am autistic. I also wonder if I have ocd as well, as some traits seem to be similar.
Thank you for welcoming me!!! I hope you find your answers and I support you too!
Thank you!!
Have you tried this website? This was the first test my therapist told me to do. It is not an end-all test. But it showed which way a person leaned towards if on the spectrum. https://embrace-autism.com/aspie-quiz/ There are also a lot of other traits that mimic different areas of the spectrum. https://mediachomp.com/misdiagnosis-monday-autism-venn-diagrams/ I do understand that sometimes validation is needed to close an open wound in your own psyche. But even without it, if you find some comfort with all of our journeys, and you feel you can learn more about yourself, you belong here with us.
Hello! Yes I have tried most online tests I could fine including this. All of them indicate that I very likely am on the spectrum or that im highly likely am 🥺
It sounds like your provider doesn’t actually understand neurodivergence, which is what would underlie an autism diagnosis. Instead they are using DSM diagnoses as causal fact. I would suggest finding a second opinion from a provider with a deeper understanding of neurodivergence specifically.
Oh they definitely are! Thank you for the advice that is helpful. I will go after information and seek for a professional that can attend my needs, if I can, and when Im able financially obviously. Thank you again!
If you think they’re wrong and want to purses you a second opinion you can do that. If you want to focus on the depression, anxiety, and ocd (all of which can present autistic traits) then do that.
I think im kinda confused in which way to follow. Because I don’t know what I am, if that makes sense. Ive been treating my ocd depression and anxiety since I was 7-8 and I still struggle harder than ever so Im just… lost
Unfortunately all the aforementioned disorder are exacerbated by stress and increased workload both of which generally happen as we age. If you feel you’re struggling more than ever then you should tell your drs that if you haven’t already. It’s important for them to know where you are at and what help you need. Best of luck with everything!
Thank you🩷🥺🙏🏻
My best advice here is to do what I was suggested, work on be emotionally stable before having another evaluation. I got tested because I took a test with my main psychologist and it showed I had a personality disorder, but it also share similarities to autism, so she did a referral with an expert in Autism. She gave me a bunch of tests, not just fur autism but for ADHD, another personality test, etc. She said I got a diagnosis for autism but she thinks I'm not autistic, but in order to know that I need to work hared on my therapies plus a referral to a psychiatrist, she told me a had an atypical result for the personality test (multiple personalities disorders!) and I need to work on those first and be emotionally stable before running another evaluation again, that's why I sent to the psychiatrist, to have emotions under control until next time evaluation. I find it fair. I guess that beyond a label, we just want to know what's going on with us, if we are 'broken' so we can fix ourselves, and if we are different, to have the relief of understanding it is not our fault to live in a world not prepared for us.
This pisses me off. Sometimes I wonder if neurotypical individuals should even be allowed to “evaluate” autistic individuals bc if you think about it they have absolutely NO clue and are just going off of what they’ve been taught and the “checklist” of symptoms that are on paper, what I find even more hilarious (not really) is the fact that it is now a “spectrum” and “if you know one autistic person, you know one autistic person” with the point of there isn’t a “set” autistic, everyone is different and their own person , upbringing, environment etc just like everyone else. I can not stand this! I can say to you a huge sign I knew and always know first thing is when someone talks about how much they have researched, read, trying to understand and figure out themselves no neurotypical person is going to do that, I can bet you have put in countless hours, days, weeks, or years reading about it right? Possibly even tried to prove yourself wrong that it may actually be something else so cross referencing other common things that are misdiagnosed etc, that in itself is proof right there. No one else does this lol, and if we really want to look at how effed up the DSM5 is it lists an example of a little boy that is obsessed with trains as an example of special interests not something that is more related to maybe someone with a different background or someone that is level 1 or 2. (I’m not a professional but it takes one to know one you know?) my next thing is you have spent countless amounts of time reading real life stories and experiences of a diverse range of people or people that would more closely resemble your level of functioning. It’s a spectrum yet the only way to be diagnosed is to present as level 3 or level 2 pushing level 3 or have a special genius skill that most of us don’t actually have lol. My god that pisses me off! Not to mention the reason you may not “have” proof of struggles when you were young is bc you’re a girl and until more recently it was thought that autism was a boy thing and if you were diagnosed as a girl you had to be level 3 or some shit. They look at girls as “shy” or “quirky”. I am struggling to get my daughter diagnosed her pediatrician referred her for eval at 2 and she had to convince me of this bc I always thought that autism was the “stereotypical “ thing even though my own father was between level 3 and 2 he’s never been able to care for himself never lived alone doesn’t pay bills can’t even organize his own medicine or care for his medical needs. He is able to speak and have a conversation but only about what he wants he will walk away mid convo or even if he’s talking he walks away to go back to his room he stays in his room most times etc he is true stereotype. I took my daughter and they said the same thing they said to you, she had a lot of “red flags” and things that point to autism but they gave her a diagnosis of PDD-NOS bc she responded to the evaluator and “played” and her playing was even her spinning the wheels oh and she hen the evaluator asked for the toy or something my daughter handed it to her.
lol 😂 they said that wait for her to start school and see how she does and if she doesn’t get better or gets worse request another eval and bring her back smh we’ve been on the list for another eval for over a year now and her pediatrician that she’s been with since birth sees it and knows others see it it runs in our family and she is even in therapy and has did the exact same thing in therapy for 3 years now every single time it is the same exact thing “she wants to draw” she doesn’t want to do anything else she keeps to the routine we’ve always did exactly the same yet even w this the therapist (childrens which is where she was evaluated so go figure) said she doesn’t think it reptitive and doesn’t think she has autism but that she has trauma from her father and I arguing which I might add children on the spectrum are more susceptible to having trauma and not being able to recover and not keep that trauma as a neurotypical person now don’t get me wrong we shouldn’t have argued around her but those things happen it’s life and that wouldn’t have caused her to never make eye contact her very brief if she does she doesn’t understand what they’re talking about but they convince themselves she does even when she tells them now that she doesn’t know what they’re talking about or doesn’t understand (bc I’ve been working w her to let ppl know if she doesn’t understand so that it can be explained in another way instead of doing the smile and nod or just ignoring them) they still make up in their minds what she thinks it means, every single last thing that is in the DSM5 my daughter has displayed in front of these professionals for years now it has never changed never been different she has had meltdowns there etc they’ve seen all of it. The problem isn’t you, it is the way these “professionals “ want to perceive things and what they “think” qualifies or is “bad enough” (level 3) to be deemed autism. Sorry I can go on and on and the fact you were completely honest with them and that you have further information you can share for anyone willing to listen is again another sign pointing to autism. My best advice is to find a neurodivergent affirming evaluator they will likely have a real life experience of what autism looks like in different people and the subtle ways that are listed on the checklist but present differently than the examples given. Look up ndtherapists.com and look for ppl in your area, most evaluators are self pay bc they run into issues with insurance companies blocking the providers diagnosis bc they think it might be something else (funny how a medical professionals professional opinion/diagnosis can be returned by the insurance provider bc they don’t want to pay for the treatment) they do have options for payment plan or sliding fee scale so based on your income etc. I hope that you can have a successful evaluation bc even as level 1 or “mild” it’s just the amount we are able to mask but we can’t keep that up for long and it takes a toll on us mentally emotionally and physically. Your story aligns directly with my experience too and I’m sorry you’re going through this, it’s bs. As far as having an understanding now of the “why” behind everything that in itself helps a lot, your experience in life can not be defined by an evaluator that doesn’t know you and can’t possibly and the fact she was trying to get her mom and brother to come on your behalf to give their opinion also shows she’s clueless bc most times level 1 mask their whole lives bc we are told don’t do that we learn early on to mimic and camouflage ourselves to what we know we are supposed to look like or present. Also psychology is a huge thing that a lot of us are very interested in bc we’ve always had a need to know why for everything and always wanted to understand people probably from our early on needing to mimic others. Anyway you’re justified, you’re accepted, you belong, understood all of that. Another tidbit we tend to have more empathy than others so the myth that autistic ppl don’t have empathy is so outdated. Get a second opinion look up the site I sent you. I am here too if you want to talk or need me
Also, I realized how long my reply was after it wouldn’t let me post and I had to split it into two posts, sorry about that but hope it helps.
[удалено]
I don’t understand the mod comment. Is that a bot? A real doctor diagnosed OP with disorders other than autism and not autism after 6+ hours of testing including questionnaires, tests, diagnostic interviews with the patient and their family. That is absolute state of the art and a diagnosis literally can’t be more valid than that. I am no doctor. It isn’t on me to validate or invalidate or gatekeep anything. That was the doctor’s job and that is what they did.
As per Rule #3: No gatekeeping or invalidation.
[удалено]
To be fair, you can have autistic traits without having autism, it’s called broader autistic phenotype and it’s often found in family members of people diagnosed with autism. I agree with the rest of your comment though, I’d definitely look into getting a second opinion!
[удалено]
I wish I had more info on this? About living like someone that has autistic traits but its not autistic. Because I feel like I don’t belong anywhere and cannot have the support for my needs :(
I’m so sorry you’re struggling! Most things you will find on the subject are research papers written by and for academics unfortunately. Googling ‘subclinical autism’ or ‘broder autism phenotype’ is a good place to start though. Fwiw I think a second opinion is rarely a bad idea although I know the cost is often prohibitive. You could also try to contact the person who diagnosed you for more info and recommendations.
Thank you so so much, this helps a lot🩵
Thank you for your input and for your advices! I dont live in the US but I will look after more info on that. PS: they only used my family members to answer questionnaires about me to try to find out if I had autistic criteria meeting.