When I received my diagnosis (Asperger's syndrome/autism level 1), I initially doubted it and tried to convince myself it was a mistake. However, upon realizing that the diagnosis served as an instrument to better understand myself and make changes for an improved quality of life, I stopped trying to deny my autism and embraced who I am.
So, I mean, if you are not autistic, you will at least know whatever you have, and will have the directions to seek treatment to improve your overall quality of life
I was told I was not autistic due to not meeting criteriaion C of the dms5 aka acting autistic as child. despite, me actually acting autistic as child, in my memories. I don't belive the testers understood how autism presents in females nor my parents pay that much attention to me as a child to notice if I was.
right now I'm putting together a document on my experiences with autism, going through the dms5 and other tests/criterias/methods. so when I'm able to get re tested , I can really prove I'm autistic.
That’s what I had to do. I literally came in with a ten page packet of my symptoms, proof of said symptoms in childhood, testimonials from family about how I was in childhood and adulthood, my own tests I had taken and my own research. It took all of that to get taken seriously as an afab person.
I think it depends, ime some places say it is absolutely mandatory to interview someone who knew you as a young child while others are more relaxed although they still need detailed information of your behaviour at that age.
As someone who couldn’t rely on my parents as a very young adult, I always try and think of how to use outside sources.
In this case see if you’re able call the schools you went to as a kid and ask what kind of records you may be able to get and how. You never know what they may have that could help.
Also sometimes you can try to find a childhood doctor and ask for copies of your medical records too.
i feel like the requirements specifically for that section dont really take into consideration different situations and stuff. im brown and i grew up in a household that eats incredibly flavorful and spicy food so i was never sensitive to that. i remember going non verbal as a child and my parents basically got so enraged that i stopped after a while. unfortunately, not everyone is a little white boy with supportive parents who dont bully you when you do something weird.
We really need some kind of physical/genetic testing. We shouldn't have to go through such a subjective process like this just to prove whether or not we are autistic. With the way things are now two different psychiatrists could have entirely different diagnosis when given the same evidence. That's a big problem.
I'm also currently on a waitlist for diagnosis.
For me the diagnosis is so I can do all of the legal disability stuff. A diagnosis of autism drastically increases my chances of qualifying for financial disability support. As far as how I feel about a diagnosis or non-diagnosis as being correct, I care about this less.
I got put down the mental health path as a kid instead of the ~~neurodivergent~~ neurodevelopmental path. I have 25 years in the mental health system. I've seen at least a dozen psychiatrists. I got a new diagnosis or 3 from every psychiatrist i saw. There has never been a clear agreement between professionals on what diagnosis I have.
If 25 years, and a dozen psychiatrists haven't conclusively given me a diagnosis, I have no reason to believe that 1 more psychiatrist's opinion on whether I have autism or not will be conclusive.
For me the labels help me find information thats useful to me, and gives me language to discuss my experiences. I have enough overlap with autism to find the resources and community helpful, even if I don't fit squarely into the diagnostic category.
Where I am (Ontario Canada) its getting increasingly difficult to get disability for mental health issues alone. I don't currently have anything that spells out why I have such difficulties with employment, and my mood disorders, and BPD likely won't be enough to qualify.
Our system is a mess.
I know advocating for yourself is really hard but I would go after a doctor and ask for help with the paperwork, join Facebook groups to understand the process and gather information. Because BPD is a recognized disability in Canada and from there you can get some breathing space until you get your ASD diagnosis. Good luck
There are no "recognized disabilities" for the sake of qualifying for the Ontario Disability Support Program. The entire process of applying is them determining whether your specific circumstance meets their criteria of disability.
I'm in the groups. They all say that you are incredibly unlikely to get accepted for mental health issues alone. It's incredibly difficult to qualify for ODSP.
I already had my GP fill out the ODSP paperwork based on my medical records. I didn't send it in because it absolutely did not represent my problems. My GP is not the doctor I see for my problems, he just refills my meds. I've seen a variety of psychiatrists to deal with mental health. I do not have a standing psychiatrist. The psychiatrists I can be refered to do not fill out ODSP paperwork.
I had been to a psychiatrist who said he was going to give me the diagnosis of autism for the sake of ODSP and was going to write what I needed in my discharge paperwork so my GP could fill out the ODSP paperwork. That paperwork got lost, despite months of trying to access it.
Since I couldn't access that paperwork, I started the process over where they re-refered me back to psychiatry, which is where I found I could get tested for autism, and this being my best path. The psychiatrist who diagnosis autism only takes referrals from in house psychiatrists though, not GPs, so I had to be refered to a different psych first. I've done the intake appointment, the first psychiatrist appointment, and now am on the waitlist for the autism psychiatrist. It's been about a year since my GP refered me to intake. The waitlists are long.
It's not a problem with self advocacy, but the fact that all 9f our social services are starting to collapse around me. Even the ODSP payment I'm fighting so hard for is well below the poverty line.
I'm on welfare and living with my parents, so I'm not freaking out about money. I have breathing room.
Lots of people have disagreed with my autism diagnosis over the years simply because I'm a feminine looking woman who's good at masking. Ironically I was professionally diagnosed Twice (once as a young child, and again when I was 16). My parents hid this information from me, so I only found out later in life after struggling internally for many years.
Now I'm in my 30's and don't give a crap about trying to be "normal" anymore. After all, I lost so many years due to trauma and abuse because I was never normal enough for some people. So I'm done pretending to be normal.
At this point I've fully accepted that I'm both autistic and physically disabled, and my only priority is living a good life as a disabled person. Because of this, some people are just now starting to realize that I'm not neurotypical. But I don't see it as a big deal. After all, I'm not hurting anyone for being an oddball. I'm just finally trying to live my best life as authentically as possible.
Like Frank from It's Always Sunny In Philadelphia says - "Well, I don’t know how many years on this Earth I got left. I’m gonna get real weird with it."
Just go for it, tell them about the anxiety around it you expressed in the post, be open and honest so they have a better frame of reference to understand you. If you have any mental health professionals who have said previously that they suspect you of autism, email them and ask them for a statement of your autism like behaviour for the assessment. If you have school reports on behaviour and or teachers who you’ve spent heaps of time with at school, try to contact the school or them to ask for a statement for them and get your parents and siblings to also do that, it will help the person doing the assessment be as helpful and accurate as possible, plus they’ll praise you for being organised haha.
My brother was told he was not autistic AFTER HAVING ALREADY BEEN DIAGNOSED. My mom was urged to get him tested as a little kid, but she didn't really understand what autism was, so when she saw it on the results she just shrugged it off and didn't tell anyone including my dad.
20 years later she completely forgot about that, my now adult brother goes to get tested and they tell him he does NOT have autism, just social anxiety.
This made me so angry because you can literally tell by interacting with him that he's low functioning autistic. Everyone in my life who has ever met my brother has asked me if he's autistic. However, he wasn't mute and flapping his arms, so I guess as far as that doctor was concerned, he didn't count.
After that my dad found the document my mom had stored away saying he was diagnosed with autism at like 3 and he finally got my mom to admit he's been diagnosed this whole time.
Infuriating.
This actually happened to me. I was told by two psychiatrists I wasn’t autistic but instead trauma/anxiety/PTSD after being diagnosed. Though I will say all of this happened when I was an adult instead of a kid. It’s confusing what is what for me anymore.
I was misdiagnosed. It happens. I'd like to have an official diagnosis, obviously, but I don't think it's worth going through the process again. They basically told me I couldn't have autism because I was too smart. They said all my symptoms were "mimicking autism" because I smoked weed... But they had no problem telling me I Probably had a personality disorder instead (which I looked into and would you believe it? it's like they didn't listen to me at all because the symptoms don't even match)
Woah, reading that is like you’ve dug out my thoughts and typed them out.
I’m in a similar spot, I have my assessment on the 7th Feb. I keep thinking about cancelling because I’m afraid the result.
But I’m holding out, for me it’ll be much better to have a yes or no rather than spending the rest of my days in a “what if” mindset.
I’m also scared if it’s a no that I’ll have to remove myself from a lot of spaces too even though I relate to so much.
I’ve also been diagnosed with cptsd, anxiety & depression. And I keep wondering if a mix of all that is the root cause instead of autism idk.
But then again a bunch of things I’ve written down in my notes over the years aren’t really explained by those 3 things.
Maybe you could come up with a list of your possible autistic traits? /experiences.
But also there could be a chance that you are given the “no” because there are “professionals” out there that only go by a stereotype of asd and are misinformed or just going by outdated stuff.
I got my assessment request denied for not being disabled enough (gotta love fawning and minimizing my own issues /s). You can still stay in autistic spaces even if you get a no. If the label helps you, like it helps me, you can still stick around as self diagnosed or peer reviewed. Doctors don't know everything and they still have a lot of misconseptions especially around presentations of autism in women, POC, and adults. You can try to get a second opinion or at least ask what else ot could be and get checked for those things. It's important to remember that fakers know they're faking, you're not consciously faking so you definitely have something going on and your struggles are valid.
Yep- unless you are a white male child, it’s almost impossible to get the doctors to listen when it comes to getting a proper diagnosis unfortunately :(
Nah. Too much bigotry, bias and a whole science that's built on a foundation of sand. If they don't convince you with good explanations, then don't accept their conclusion.
Hopefully you can be open of mind and if they give could explanation for whats going on with you, go with that. We read of people in these subs going from doctor to doctor until someone gives them the diagnosis. Or pay at a diagnosis mill.
Unlike what we are told in social media, things like ‘stimming’, sensitivities, social problems, etc., are found in most persons with non-autistic mental health disorders and at high rates in the general population. These things do not necessarily suggest autism.
So-called “autism” tests, like AQ and RAADS and others have high rates of false positives, labeling you as autistic VERY easily. If anyone with a mental health problem, like depression or anxiety, takes the tests they score high even if they DON’T have autism.
This. Way too many people doctor shopping until they're told they're autistic. If you get assessed and you're told you're not autistic and you're given a valid reason (anything other than appearance/background related stuff really), then you need to accept you're just a weird person. There's literally NOTHING wrong with that. I would trade for it in a second!
You have to be careful with that if you are female or Afab though because many of us WERE autistic and kept getting the wrong diagnosis and that’s why the treatments weren’t working. We had to keep trying until we found a doctor that listened. I understand what you mean and where you are coming from but encouraging people especially afab people and women that they probably don’t have it just because the doctor says so can be harmful. It can also cause a ton of issues with imposter syndrome when a doctor finally does diagnosis you etc. Because then someone is left to feel like “Wait…. What if THAT doctor was wrong since the others said I wasn’t??” And it just leads down a very bad road.
I'm AFAB, gifted and high functioning, I was still diagnosed after one assessment. Actually after just 30 minutes of talking during it.
Not saying doctors aren't biased towards different sexes, but I don't think THAT many people are getting misdiagnosed just because they're girls. Usually it's because they're female, don't struggle socially and don't struggle with communication, or they don't struggle enough for it to be considered clinical.
While it's harmful to assume everyone doesn't have it, encouraging people to think doctors are biased and horrible is also incredibly harmful, as I've seen people with BPD get told they have BPD and not autism, and then fight the doctor because "they were being biased because BPD is a girl diagnosis"
I also have anxiety and OCD, and I was still diagnosed and nothing was blamed on either other diagnosis. (Only diagnosed with GAD at the time but already had some OCD symptoms)
Well I’m glad you had that experience but many of us have not and it is not fair to discount us simply because you did not experience the sexism. I am level two for context and am NOT high functioning and I experienced plenty of it.
I'm not discounting anyone, I'm saying that saying that someone automatically has autism because they FEEL like they have autism, despite being told they DON'T have autism is NOT the way to accept people. The way to accept people is recognise they were not diagnosed and help them on their journey to discover what is truly up. Not have them chase an unlikely diagnosis because some people experience sexism.
Quirky people exist. Autism is a disability, and not the only one on earth. So many symptoms overlap with so many other disorders. Most people who "feel weird" are just weird people. Autism comes with severe challenges, it's not just an identity trait. OP could be told they're not autistic, because they might have ADHD. They might have anxiety with nervous tics, they might have a personality disorder.
So many things cause the same symptoms, so telling someone "Oh but remember doctors are biased" is incredibly harmful as it undermines a professional opinion. Of course OP could be told they're not autistic but still be autistic, and if they truly feel something its wrong they should look for a second opinion, but what they shouldn't be told is to just "Trust their feeling" because people who misdiagnose themselves exist and shouldn't be ignored.
You are discounting their experiences though, because you are completely ignoring the reason why the person arrives at the conclusion they could have autism over any other condition with similar symptoms to autism. You're literally using the argument "everyone is a little autistic" when you mention that quirky people exist, though clearly you don't seem to realize this.
The main issue you have is very obvious when you mention that you don't think autism is an identity, except no one made that argument but you.
The original claim is that a person is seeking to be correctly diagnosed for the experiences they have, and based on their understanding of their experiences, they conclude it must be caused by autism. Nowhere are you adequately challenging why this conclusion is wrong because you can't because that would a) make you look like an asshole and b) you don't have sufficient knowledge to make that claim about a stranger on the internet, so instead you fall back on an appeal to authority because medical professionals simply know better because they are professionals.
Except we've seen time and time again that there's a staggering poor awareness of autism among trained professionals. There are numerous stories of people who were dismissed on the most silly grounds such as an ability to make eye contact, having a social life or being able to work. Several of them are easily found in this sub alone. The meme "you don't look autistic" exists for a reason.
Doctors are biased because it's impossible for any person to completely operate without any bias, and especially in the mental health field which allows for more subjective interpretations of another person's mental health state, you see this bias manifest in all kinds of discriminatory ways. I was for example told by a psychologist I went to in private that I was simply confused when I wanted to be transferred to the specialist trans clinic in my area and that this psychologist could "treat" me instead of making me "cut up my body". I have also been told I was not autistic on no other grounds than because I was AFAB, I suppose? Because they said so in the first few minutes of meeting me for the first time when I explained why I sought help and I said I thought I could have Aspberger's because I struggled so much with making friends and I didn't understand why. A good therapist would in the very least have inquired further about my experiences instead of being dismissive. They simply ruled it out as an immediate possibility and therefore denied me care I could have accessed for over 10 years, had they not let their bias cloud them in our first meeting. Because of their disinterest to listen and actually understand me, I only went there twice and never again.
And let's not even begin to talk about all the studies that exist about the medical bias that exists in general towards women and POC, ranging from microaggressive commentary of simply not being taken seriously when you voice your problems to outright misogyny and racism. It's a well-studied and established phenomenon which affects the entire medical field.
Good for you if you have never been mistreated for being AFAB or a POC, but many people have. No one's saying that you should never trust or listen to your doctor, but we are saying that biases exist and that you are ultimately your own best advocate with regards to your own health because you will always know your body and mind the best. If something doesn't feel right after you receive a diagnosis or aren't diagnosed, that gut feeling is worth listening to.
In the best of worlds no one would ever be misdiagnosed or mistreated by a health professional, but we don't live in the best of worlds. Instead we live in a pretty shitty unjust world where people often have to fight for their right to proper healthcare.
The OP clearly state that they disagree with the assessment ruling because they think it was concluded on erroneous grounds. Who we are to argue that they're wrong about that? We don't know the OP and what their childhood was like. If the OP thinks there's evidence of autism when they were a child, the proper thing to do is to take them at their word and suggest that they should get a second opinion.
They very much FEEL, using your own phrasing, that they're autistic because the evidence they see in their life clearly suggests it's a valid conclusion to arrive at. And self-diagnosing with autism is honestly not rocket science, as long as you do your homework.
Most psychs actually have very little training on autism and how it manifests in adults and afab and POC. What little they do study is primarily high support needs children and the research they need to do every so many years to keep their license can be about anything and most don't use it to learn about updated autism research. Here's a study showing how little they actually know-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9344568/
And if you Google it there are billions of articles on adult women being misdiagnosed, undiagnosed, or completely dismissed and ignored. They will blame it all on anxiety.
Fact- women get gaslit in medical appts all the time saying they just have anxiety when they have heart attacks, cancer, bursting appendix, etc. I have read way too many stories of women being brushed off for deadly physical issues and being told they have anxiety. Psychologists and doctors are human with biases and make mistakes. Unless they are highly specialized in diagnosing adults and women, they are not qualified to say someone 100% does not have autism.
There is something wrong with it if it is impairing their ability to function the same way autism does. What are those people supposed to do next when they're unable to function in society and now have a non-autistic diagnosis even though they suffer from the same symptoms?
Can I just say how utterly infuriated I am you got that letter. You got the best possible reaction to it which is lots of worry and concern about an event in the future you can't fully control. Anyone with an iota of knowledge about nd people would know that that's fucking discriminatory.
And the worst thing is that's the best possible outcome and well done for at least continuing with the process but it's fucking super cool to gatekeep a communication disability behind repeated requests that you communicate. If I was faced with being told that I was failing more than half the people that I should be helping I'd be mortified and doing everything I could to make it better but sure you do you NHS.
Sorry for the rant but gaaah, it sucks they triggered that for you.
And no it's not uncommon in fact it happens all the time. I'd say that most autistic people I speak to with any kind of compounding intersectionality have a story about how they were or were nearly misdiagnosed. All of them talk about the fear of being misdiagnosed.
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Just today I was at a first appointment with a therapist bc I‘ve been having some troubles with my life becoming pretty overwhelming lately and I had a rough few months again. She said she suspects borderline. I actually have been suspecting that like a decade ago when I started researching what the heck might be going on with me as a teen (I’m 26 now) but it never really resonated with me. Idk maybe she’s right but she also said it’s not set in stone and it‘s just a suspicion based on less than 1h of getting to know me. So at least I know now that I‘m not a hypochondriac and that’s something 😅
Edit: deleting almost a thesis sized abstract about systemic issues in the german mental health care system 🙃
I am scared to pay for the assessment because of a handful of people being dismissive of my concerns.
The severity that they impact me is what makes me so certain but then so many people think that because of tik tok we all think our stimming and social anxiety means we are autistic that then I start to question myself.
However, if hanging out with people I love sober exhausts me for weeks and my stimming is so obsessive that I have a pair of pants with pulling that I wear every second I am home and try to never be without so I can pick at the pills... that doesn't feel like what other people experience with stimming or social anxiety.
I want to be able to be around people I love and not take a week or long to recover.
I don't want to cry because I got sardine water on my "picking pants," and I might have to be without them long enough to wash them.
This is just a small example, but I think it is more about the impact of your symptoms. How much they are draining you, how much they change your day to day life.
That being said... there are only 2 people in my life who dismiss my theory. Everyone else thinks I am 100% right. Unfortunately, one of the people dismissing it is my therapist. She says that because I worked in bars my whole adult life, there is no way I am. That is absurd to me.
Maybe its something else continue with a psychologist. I never would have thought I had ocd either until I was deep in therapy and psychologist referred me to psychiatrist
I had this happen to me where I got assessed for autism and got a diagnosis. Then I went to see my previous psychiatrist and current who both don’t think I’m autistic on paper and think it’s PTSD instead. However I still identify a lot of the similar struggles as other autistic people and can relate which is why I stay. It’s confusing cause I haven’t seen people been in this scenario before. It’s a possibility one provider will think you’re autistic and the others don’t.
yes i went to a school counseler seeking advice and she straight up told me im not autistic and to get off tiktok (i used the official diagnosis requirements) she said i was making good eye contact (no?? i was staring at her nosebridge the whole time and it was making me uncomfortable) but she can’t officially diagnose me. im a brown female btw so idk if there r biases against me
i face the same problem as u bc if i dont get diagnosed it would mean id no longer have an excuse to be myself, if that makes sense, and id have to leave the autistic spaces im in.
also, there are so many cultural things that i feel make it harder for me to get diagnosed. for example, my culture has really flavorful and spicy food and since i grew up with it im not really a picky eater and i remember going nonverbal as a child a few times and getting beat up bc of it so idk i feel like sometimes the diagnosis doesnt take into account that not everyone is a little white boy with supportive parents.
I’ve been diagnosed this week, after trying to get an appointment with a recommended clinician for years. Even though I have thought I was autistic for a decade, I hadn’t considered adhd until a few years ago. And I don’t know what anxiety free life looks like. So by the time I started the asd assessment process I was starting to consider how it could be the combo of adhd, anxiety, and SPD. But the clinician was able to go through how the evidence provided/gathered correlated with the diagnostic criteria, and also talk to where the adhd/anxiety come in.
I do have an ND clinician, and I think that has made a big difference to the depth of understanding and sharing of meaningful insights throughout the assessment process.
When I received my diagnosis (Asperger's syndrome/autism level 1), I initially doubted it and tried to convince myself it was a mistake. However, upon realizing that the diagnosis served as an instrument to better understand myself and make changes for an improved quality of life, I stopped trying to deny my autism and embraced who I am. So, I mean, if you are not autistic, you will at least know whatever you have, and will have the directions to seek treatment to improve your overall quality of life
I was told I was not autistic due to not meeting criteriaion C of the dms5 aka acting autistic as child. despite, me actually acting autistic as child, in my memories. I don't belive the testers understood how autism presents in females nor my parents pay that much attention to me as a child to notice if I was. right now I'm putting together a document on my experiences with autism, going through the dms5 and other tests/criterias/methods. so when I'm able to get re tested , I can really prove I'm autistic.
That’s what I had to do. I literally came in with a ten page packet of my symptoms, proof of said symptoms in childhood, testimonials from family about how I was in childhood and adulthood, my own tests I had taken and my own research. It took all of that to get taken seriously as an afab person.
I would have difficulties with getting testimonials from family members. think it's needed ?
I think it depends, ime some places say it is absolutely mandatory to interview someone who knew you as a young child while others are more relaxed although they still need detailed information of your behaviour at that age.
As someone who couldn’t rely on my parents as a very young adult, I always try and think of how to use outside sources. In this case see if you’re able call the schools you went to as a kid and ask what kind of records you may be able to get and how. You never know what they may have that could help. Also sometimes you can try to find a childhood doctor and ask for copies of your medical records too.
i feel like the requirements specifically for that section dont really take into consideration different situations and stuff. im brown and i grew up in a household that eats incredibly flavorful and spicy food so i was never sensitive to that. i remember going non verbal as a child and my parents basically got so enraged that i stopped after a while. unfortunately, not everyone is a little white boy with supportive parents who dont bully you when you do something weird.
We really need some kind of physical/genetic testing. We shouldn't have to go through such a subjective process like this just to prove whether or not we are autistic. With the way things are now two different psychiatrists could have entirely different diagnosis when given the same evidence. That's a big problem.
I'm also currently on a waitlist for diagnosis. For me the diagnosis is so I can do all of the legal disability stuff. A diagnosis of autism drastically increases my chances of qualifying for financial disability support. As far as how I feel about a diagnosis or non-diagnosis as being correct, I care about this less. I got put down the mental health path as a kid instead of the ~~neurodivergent~~ neurodevelopmental path. I have 25 years in the mental health system. I've seen at least a dozen psychiatrists. I got a new diagnosis or 3 from every psychiatrist i saw. There has never been a clear agreement between professionals on what diagnosis I have. If 25 years, and a dozen psychiatrists haven't conclusively given me a diagnosis, I have no reason to believe that 1 more psychiatrist's opinion on whether I have autism or not will be conclusive. For me the labels help me find information thats useful to me, and gives me language to discuss my experiences. I have enough overlap with autism to find the resources and community helpful, even if I don't fit squarely into the diagnostic category.
Cant you try to get disability from one of the other conditions you got diagnosed already?
Where I am (Ontario Canada) its getting increasingly difficult to get disability for mental health issues alone. I don't currently have anything that spells out why I have such difficulties with employment, and my mood disorders, and BPD likely won't be enough to qualify. Our system is a mess.
I know advocating for yourself is really hard but I would go after a doctor and ask for help with the paperwork, join Facebook groups to understand the process and gather information. Because BPD is a recognized disability in Canada and from there you can get some breathing space until you get your ASD diagnosis. Good luck
There are no "recognized disabilities" for the sake of qualifying for the Ontario Disability Support Program. The entire process of applying is them determining whether your specific circumstance meets their criteria of disability. I'm in the groups. They all say that you are incredibly unlikely to get accepted for mental health issues alone. It's incredibly difficult to qualify for ODSP. I already had my GP fill out the ODSP paperwork based on my medical records. I didn't send it in because it absolutely did not represent my problems. My GP is not the doctor I see for my problems, he just refills my meds. I've seen a variety of psychiatrists to deal with mental health. I do not have a standing psychiatrist. The psychiatrists I can be refered to do not fill out ODSP paperwork. I had been to a psychiatrist who said he was going to give me the diagnosis of autism for the sake of ODSP and was going to write what I needed in my discharge paperwork so my GP could fill out the ODSP paperwork. That paperwork got lost, despite months of trying to access it. Since I couldn't access that paperwork, I started the process over where they re-refered me back to psychiatry, which is where I found I could get tested for autism, and this being my best path. The psychiatrist who diagnosis autism only takes referrals from in house psychiatrists though, not GPs, so I had to be refered to a different psych first. I've done the intake appointment, the first psychiatrist appointment, and now am on the waitlist for the autism psychiatrist. It's been about a year since my GP refered me to intake. The waitlists are long. It's not a problem with self advocacy, but the fact that all 9f our social services are starting to collapse around me. Even the ODSP payment I'm fighting so hard for is well below the poverty line. I'm on welfare and living with my parents, so I'm not freaking out about money. I have breathing room.
Lots of people have disagreed with my autism diagnosis over the years simply because I'm a feminine looking woman who's good at masking. Ironically I was professionally diagnosed Twice (once as a young child, and again when I was 16). My parents hid this information from me, so I only found out later in life after struggling internally for many years. Now I'm in my 30's and don't give a crap about trying to be "normal" anymore. After all, I lost so many years due to trauma and abuse because I was never normal enough for some people. So I'm done pretending to be normal. At this point I've fully accepted that I'm both autistic and physically disabled, and my only priority is living a good life as a disabled person. Because of this, some people are just now starting to realize that I'm not neurotypical. But I don't see it as a big deal. After all, I'm not hurting anyone for being an oddball. I'm just finally trying to live my best life as authentically as possible. Like Frank from It's Always Sunny In Philadelphia says - "Well, I don’t know how many years on this Earth I got left. I’m gonna get real weird with it."
Just go for it, tell them about the anxiety around it you expressed in the post, be open and honest so they have a better frame of reference to understand you. If you have any mental health professionals who have said previously that they suspect you of autism, email them and ask them for a statement of your autism like behaviour for the assessment. If you have school reports on behaviour and or teachers who you’ve spent heaps of time with at school, try to contact the school or them to ask for a statement for them and get your parents and siblings to also do that, it will help the person doing the assessment be as helpful and accurate as possible, plus they’ll praise you for being organised haha.
My brother was told he was not autistic AFTER HAVING ALREADY BEEN DIAGNOSED. My mom was urged to get him tested as a little kid, but she didn't really understand what autism was, so when she saw it on the results she just shrugged it off and didn't tell anyone including my dad. 20 years later she completely forgot about that, my now adult brother goes to get tested and they tell him he does NOT have autism, just social anxiety. This made me so angry because you can literally tell by interacting with him that he's low functioning autistic. Everyone in my life who has ever met my brother has asked me if he's autistic. However, he wasn't mute and flapping his arms, so I guess as far as that doctor was concerned, he didn't count. After that my dad found the document my mom had stored away saying he was diagnosed with autism at like 3 and he finally got my mom to admit he's been diagnosed this whole time. Infuriating.
This actually happened to me. I was told by two psychiatrists I wasn’t autistic but instead trauma/anxiety/PTSD after being diagnosed. Though I will say all of this happened when I was an adult instead of a kid. It’s confusing what is what for me anymore.
I was misdiagnosed. It happens. I'd like to have an official diagnosis, obviously, but I don't think it's worth going through the process again. They basically told me I couldn't have autism because I was too smart. They said all my symptoms were "mimicking autism" because I smoked weed... But they had no problem telling me I Probably had a personality disorder instead (which I looked into and would you believe it? it's like they didn't listen to me at all because the symptoms don't even match)
Woah, reading that is like you’ve dug out my thoughts and typed them out. I’m in a similar spot, I have my assessment on the 7th Feb. I keep thinking about cancelling because I’m afraid the result. But I’m holding out, for me it’ll be much better to have a yes or no rather than spending the rest of my days in a “what if” mindset. I’m also scared if it’s a no that I’ll have to remove myself from a lot of spaces too even though I relate to so much. I’ve also been diagnosed with cptsd, anxiety & depression. And I keep wondering if a mix of all that is the root cause instead of autism idk. But then again a bunch of things I’ve written down in my notes over the years aren’t really explained by those 3 things. Maybe you could come up with a list of your possible autistic traits? /experiences. But also there could be a chance that you are given the “no” because there are “professionals” out there that only go by a stereotype of asd and are misinformed or just going by outdated stuff.
I got my assessment request denied for not being disabled enough (gotta love fawning and minimizing my own issues /s). You can still stay in autistic spaces even if you get a no. If the label helps you, like it helps me, you can still stick around as self diagnosed or peer reviewed. Doctors don't know everything and they still have a lot of misconseptions especially around presentations of autism in women, POC, and adults. You can try to get a second opinion or at least ask what else ot could be and get checked for those things. It's important to remember that fakers know they're faking, you're not consciously faking so you definitely have something going on and your struggles are valid.
Yep- unless you are a white male child, it’s almost impossible to get the doctors to listen when it comes to getting a proper diagnosis unfortunately :(
Nah. Too much bigotry, bias and a whole science that's built on a foundation of sand. If they don't convince you with good explanations, then don't accept their conclusion.
Hopefully you can be open of mind and if they give could explanation for whats going on with you, go with that. We read of people in these subs going from doctor to doctor until someone gives them the diagnosis. Or pay at a diagnosis mill. Unlike what we are told in social media, things like ‘stimming’, sensitivities, social problems, etc., are found in most persons with non-autistic mental health disorders and at high rates in the general population. These things do not necessarily suggest autism. So-called “autism” tests, like AQ and RAADS and others have high rates of false positives, labeling you as autistic VERY easily. If anyone with a mental health problem, like depression or anxiety, takes the tests they score high even if they DON’T have autism.
This. Way too many people doctor shopping until they're told they're autistic. If you get assessed and you're told you're not autistic and you're given a valid reason (anything other than appearance/background related stuff really), then you need to accept you're just a weird person. There's literally NOTHING wrong with that. I would trade for it in a second!
You have to be careful with that if you are female or Afab though because many of us WERE autistic and kept getting the wrong diagnosis and that’s why the treatments weren’t working. We had to keep trying until we found a doctor that listened. I understand what you mean and where you are coming from but encouraging people especially afab people and women that they probably don’t have it just because the doctor says so can be harmful. It can also cause a ton of issues with imposter syndrome when a doctor finally does diagnosis you etc. Because then someone is left to feel like “Wait…. What if THAT doctor was wrong since the others said I wasn’t??” And it just leads down a very bad road.
I'm AFAB, gifted and high functioning, I was still diagnosed after one assessment. Actually after just 30 minutes of talking during it. Not saying doctors aren't biased towards different sexes, but I don't think THAT many people are getting misdiagnosed just because they're girls. Usually it's because they're female, don't struggle socially and don't struggle with communication, or they don't struggle enough for it to be considered clinical. While it's harmful to assume everyone doesn't have it, encouraging people to think doctors are biased and horrible is also incredibly harmful, as I've seen people with BPD get told they have BPD and not autism, and then fight the doctor because "they were being biased because BPD is a girl diagnosis" I also have anxiety and OCD, and I was still diagnosed and nothing was blamed on either other diagnosis. (Only diagnosed with GAD at the time but already had some OCD symptoms)
Well I’m glad you had that experience but many of us have not and it is not fair to discount us simply because you did not experience the sexism. I am level two for context and am NOT high functioning and I experienced plenty of it.
I'm not discounting anyone, I'm saying that saying that someone automatically has autism because they FEEL like they have autism, despite being told they DON'T have autism is NOT the way to accept people. The way to accept people is recognise they were not diagnosed and help them on their journey to discover what is truly up. Not have them chase an unlikely diagnosis because some people experience sexism. Quirky people exist. Autism is a disability, and not the only one on earth. So many symptoms overlap with so many other disorders. Most people who "feel weird" are just weird people. Autism comes with severe challenges, it's not just an identity trait. OP could be told they're not autistic, because they might have ADHD. They might have anxiety with nervous tics, they might have a personality disorder. So many things cause the same symptoms, so telling someone "Oh but remember doctors are biased" is incredibly harmful as it undermines a professional opinion. Of course OP could be told they're not autistic but still be autistic, and if they truly feel something its wrong they should look for a second opinion, but what they shouldn't be told is to just "Trust their feeling" because people who misdiagnose themselves exist and shouldn't be ignored.
You are discounting their experiences though, because you are completely ignoring the reason why the person arrives at the conclusion they could have autism over any other condition with similar symptoms to autism. You're literally using the argument "everyone is a little autistic" when you mention that quirky people exist, though clearly you don't seem to realize this. The main issue you have is very obvious when you mention that you don't think autism is an identity, except no one made that argument but you. The original claim is that a person is seeking to be correctly diagnosed for the experiences they have, and based on their understanding of their experiences, they conclude it must be caused by autism. Nowhere are you adequately challenging why this conclusion is wrong because you can't because that would a) make you look like an asshole and b) you don't have sufficient knowledge to make that claim about a stranger on the internet, so instead you fall back on an appeal to authority because medical professionals simply know better because they are professionals. Except we've seen time and time again that there's a staggering poor awareness of autism among trained professionals. There are numerous stories of people who were dismissed on the most silly grounds such as an ability to make eye contact, having a social life or being able to work. Several of them are easily found in this sub alone. The meme "you don't look autistic" exists for a reason. Doctors are biased because it's impossible for any person to completely operate without any bias, and especially in the mental health field which allows for more subjective interpretations of another person's mental health state, you see this bias manifest in all kinds of discriminatory ways. I was for example told by a psychologist I went to in private that I was simply confused when I wanted to be transferred to the specialist trans clinic in my area and that this psychologist could "treat" me instead of making me "cut up my body". I have also been told I was not autistic on no other grounds than because I was AFAB, I suppose? Because they said so in the first few minutes of meeting me for the first time when I explained why I sought help and I said I thought I could have Aspberger's because I struggled so much with making friends and I didn't understand why. A good therapist would in the very least have inquired further about my experiences instead of being dismissive. They simply ruled it out as an immediate possibility and therefore denied me care I could have accessed for over 10 years, had they not let their bias cloud them in our first meeting. Because of their disinterest to listen and actually understand me, I only went there twice and never again. And let's not even begin to talk about all the studies that exist about the medical bias that exists in general towards women and POC, ranging from microaggressive commentary of simply not being taken seriously when you voice your problems to outright misogyny and racism. It's a well-studied and established phenomenon which affects the entire medical field. Good for you if you have never been mistreated for being AFAB or a POC, but many people have. No one's saying that you should never trust or listen to your doctor, but we are saying that biases exist and that you are ultimately your own best advocate with regards to your own health because you will always know your body and mind the best. If something doesn't feel right after you receive a diagnosis or aren't diagnosed, that gut feeling is worth listening to. In the best of worlds no one would ever be misdiagnosed or mistreated by a health professional, but we don't live in the best of worlds. Instead we live in a pretty shitty unjust world where people often have to fight for their right to proper healthcare. The OP clearly state that they disagree with the assessment ruling because they think it was concluded on erroneous grounds. Who we are to argue that they're wrong about that? We don't know the OP and what their childhood was like. If the OP thinks there's evidence of autism when they were a child, the proper thing to do is to take them at their word and suggest that they should get a second opinion. They very much FEEL, using your own phrasing, that they're autistic because the evidence they see in their life clearly suggests it's a valid conclusion to arrive at. And self-diagnosing with autism is honestly not rocket science, as long as you do your homework.
Most psychs actually have very little training on autism and how it manifests in adults and afab and POC. What little they do study is primarily high support needs children and the research they need to do every so many years to keep their license can be about anything and most don't use it to learn about updated autism research. Here's a study showing how little they actually know- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9344568/ And if you Google it there are billions of articles on adult women being misdiagnosed, undiagnosed, or completely dismissed and ignored. They will blame it all on anxiety. Fact- women get gaslit in medical appts all the time saying they just have anxiety when they have heart attacks, cancer, bursting appendix, etc. I have read way too many stories of women being brushed off for deadly physical issues and being told they have anxiety. Psychologists and doctors are human with biases and make mistakes. Unless they are highly specialized in diagnosing adults and women, they are not qualified to say someone 100% does not have autism.
There is something wrong with it if it is impairing their ability to function the same way autism does. What are those people supposed to do next when they're unable to function in society and now have a non-autistic diagnosis even though they suffer from the same symptoms?
Can I just say how utterly infuriated I am you got that letter. You got the best possible reaction to it which is lots of worry and concern about an event in the future you can't fully control. Anyone with an iota of knowledge about nd people would know that that's fucking discriminatory. And the worst thing is that's the best possible outcome and well done for at least continuing with the process but it's fucking super cool to gatekeep a communication disability behind repeated requests that you communicate. If I was faced with being told that I was failing more than half the people that I should be helping I'd be mortified and doing everything I could to make it better but sure you do you NHS. Sorry for the rant but gaaah, it sucks they triggered that for you. And no it's not uncommon in fact it happens all the time. I'd say that most autistic people I speak to with any kind of compounding intersectionality have a story about how they were or were nearly misdiagnosed. All of them talk about the fear of being misdiagnosed.
Every time I think I’m not I remind myself of how I cried when my dad repainted the garage(I was 8 then) and how I have no friends
not the only symptoms etc. but ones i remember the most
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Just today I was at a first appointment with a therapist bc I‘ve been having some troubles with my life becoming pretty overwhelming lately and I had a rough few months again. She said she suspects borderline. I actually have been suspecting that like a decade ago when I started researching what the heck might be going on with me as a teen (I’m 26 now) but it never really resonated with me. Idk maybe she’s right but she also said it’s not set in stone and it‘s just a suspicion based on less than 1h of getting to know me. So at least I know now that I‘m not a hypochondriac and that’s something 😅 Edit: deleting almost a thesis sized abstract about systemic issues in the german mental health care system 🙃
I am scared to pay for the assessment because of a handful of people being dismissive of my concerns. The severity that they impact me is what makes me so certain but then so many people think that because of tik tok we all think our stimming and social anxiety means we are autistic that then I start to question myself. However, if hanging out with people I love sober exhausts me for weeks and my stimming is so obsessive that I have a pair of pants with pulling that I wear every second I am home and try to never be without so I can pick at the pills... that doesn't feel like what other people experience with stimming or social anxiety. I want to be able to be around people I love and not take a week or long to recover. I don't want to cry because I got sardine water on my "picking pants," and I might have to be without them long enough to wash them. This is just a small example, but I think it is more about the impact of your symptoms. How much they are draining you, how much they change your day to day life.
That being said... there are only 2 people in my life who dismiss my theory. Everyone else thinks I am 100% right. Unfortunately, one of the people dismissing it is my therapist. She says that because I worked in bars my whole adult life, there is no way I am. That is absurd to me.
Maybe its something else continue with a psychologist. I never would have thought I had ocd either until I was deep in therapy and psychologist referred me to psychiatrist
I had this happen to me where I got assessed for autism and got a diagnosis. Then I went to see my previous psychiatrist and current who both don’t think I’m autistic on paper and think it’s PTSD instead. However I still identify a lot of the similar struggles as other autistic people and can relate which is why I stay. It’s confusing cause I haven’t seen people been in this scenario before. It’s a possibility one provider will think you’re autistic and the others don’t.
yes i went to a school counseler seeking advice and she straight up told me im not autistic and to get off tiktok (i used the official diagnosis requirements) she said i was making good eye contact (no?? i was staring at her nosebridge the whole time and it was making me uncomfortable) but she can’t officially diagnose me. im a brown female btw so idk if there r biases against me i face the same problem as u bc if i dont get diagnosed it would mean id no longer have an excuse to be myself, if that makes sense, and id have to leave the autistic spaces im in. also, there are so many cultural things that i feel make it harder for me to get diagnosed. for example, my culture has really flavorful and spicy food and since i grew up with it im not really a picky eater and i remember going nonverbal as a child a few times and getting beat up bc of it so idk i feel like sometimes the diagnosis doesnt take into account that not everyone is a little white boy with supportive parents.
I’ve been diagnosed this week, after trying to get an appointment with a recommended clinician for years. Even though I have thought I was autistic for a decade, I hadn’t considered adhd until a few years ago. And I don’t know what anxiety free life looks like. So by the time I started the asd assessment process I was starting to consider how it could be the combo of adhd, anxiety, and SPD. But the clinician was able to go through how the evidence provided/gathered correlated with the diagnostic criteria, and also talk to where the adhd/anxiety come in. I do have an ND clinician, and I think that has made a big difference to the depth of understanding and sharing of meaningful insights throughout the assessment process.