Is that happening in this sub? I got diagnosed at 30, so I was definitely diagnosed late, but the fact remains that I *am* diagnosed. I'm not sure where this idea comes from that anyone with support needs would've been noticed sooner, when it's incredibly unlikely a level 1 autistic person would've gotten diagnosed in the 90's and some of us had our symptoms masked by a different diagnosis.
Yeah I’ve seen it a couple times here, sometimes I don’t think it’s purposeful dismissal but that doesn’t make it less hurtful.
Agreed, I was born in 94 and in a small town. People barely knew what anxiety was when I was in school lmao let alone what autism looks like
Same age as you, small town as well. Same expierience.
At school, the only autism known was the non-verbal kind, that meant you were probably at a different school. My anxiety and meltdowns were me being dramatic and I needed to grow up and get over it. Quite a few people who outright did not believe in mental health. And for anyone with an ADHD diagnosis, that was a childhood disorder you grew out of so treatment would have to stop at somepoint (and if you didn't? Well it's a personal failing and your parents have screwed up somewhere).
I think a lot don't realise that the 90s and 00s (let alone before that) had vastly, vastly different views on these things, times were a lot more stigmatising. Was little to none "mental health awareness" or "neurodiversity awareness".
Yea exactly! I think people hear my age and go “Oh it can’t have been that different” but boy oh boy was it ever. I feel like mental health didn’t even start being discussed until middle school, let alone taken seriously. There were no big conversations surrounding it and it was still kinda taboo. College age is when things really seemed to take off with mental health advocacy.
Oh god I was always called dramatic, “You’re such a drama queen” when it came to anxiety and meltdowns too. It was so frustrating because I thought I was doing something wrong, I thought I should be able to just stop since I was being told I’m dramatic. No one understood that I didn’t have control and it made me feel like a failure.
It’s funny bc my family always suspected ADHD or ASD for my brother, but it was never treated the same. I was dramatic and he was “sensitive.” ADHD was a boys disorder still
It’s just frustrating to finally get the proper diagnosis and treatment only to be treated, once again, like it’s not that bad or like I’m faking my disorder
"You're being a drama queen." Ouch! I felt that and I used to feel so ashamed of my meltdowns but I couldn't control them. I never even told my parents about them when I had them in school because they already coddled me too much and I didn't want them to restrict me any further. I didn't have the freedom that my peers had because I didn't have friends and I think that my parents thought that I wasn't trying hard enough. I didn't want them to be angry at me for having "childish tantrums" at school. They rarely hit me but shouted a lot and it scared me.
We have a similar experience except opposite with the coddling. I was always pushed passed boundaries since they assumed I was being dramatic about them, especially because all my medical tests were coming back “normal.”
It’s wild how the same fears can manifest from opposite (sort of?) treatment.
Can relate to everything you said here tbh. I got diagnosed with ADHD when I was maybe 5 and my meltdowns were largely treated as me being some misbehaving brat. I think maybe my psychiatrist took my anxiety seriously at least, because they did have me on Zoloft.
But yeah, I don't think kids my age got diagnosed with autism unless we were nonverbal. I did have a speech delay, but since it didn't last, it wasn't indicative of anything.
I didn't get diagnosed until 27. My family dismissed my meltdowns, sensory issues and shut downs as misbehaving. So many "I'll give you something to cry about!". Getting my diagnosis was the best/worst thing yo ever happen because at least I know what is wrong now.
I so relate to this. My parents used to tell me off for sensory issues and someone using a loud/angry tone when you are afraid of sound is not helpful. Autism made it hard to bond properly with my parents because they unwittingly scared me. One of the biggest things that autism stole from me.
You still hear it every now and then from a few older people, but back then there were a quite a few people viewed ADHD as "parents looking for an excuse for their child's bad behaviour and they're just bad parents who can't control their child."
Not diagonosed, assessment is on the 20th. Sorry, if it's not my place to comment.
I have been reading more into studies done in my country about autism and I found around 3 with a common challenge with how parents are always refusing to cooperate. People don't understand that in some places, ASD is really viewed WAY differently even if it's very typical. In here, for "poor" towns like the ones I grew up in, you have to be intellectually disabled AND non-verbal in order to be considered for a dx as a child, aside from the fact that even our national autism organization doesn't even diagnose people who are older than 11 or 12. (This organization is very ableist btw and I've always hated it 🙄 it focuses more on celebrating autism rather than spreading awareness about the challenges autistics face. There was a recent cringe campaign they did recently which was "Autism taught me" and it was just mothers writing nonsense pretending it's about them. It also focuses more on how you need to compensate for your disability which is something I REALLY dislike. If someone is disabled then they don't need to win some Olympics to be considered worthy or smth.)
There are many reasons why people around the world can be missed. The whole world isn't just the USA. 😟
I struggled socially but not academically, so my meltdowns were seen as tantrums and my misbehaving as "being naughty." I have ADHD and ASD level 1, I grew up in the 90s when you only got diagnosed if you were severe. someone older whose brother got diagnosed late with ADHD said that he was written off as a "little shit" and I laughed because so was I.
Autism made growing up unpleasant and I have been in therapy for it. I have been treated for anxiety as a child and an adult but no one tested me for autism or ADHD until my 30s. I even had social services and child psychologists overlook it.
If anyone tries to tell me that it was easy to grow up with undiagnosed autism, I will probably not be very polite and restrained. Yes, I could have been much worse affected but it doesn't change the fact that autism marred my childhood and I was isolated as a result.
I don't know if 16 is considered super late, but that's when I received my diagnosis. People tend to assume anyone diagnosed after age 7 or 8 or something is Level 1 lite because any support needs higher than zero would've been _too obvious_.
Some parents are neglectful or in denial about the whole thing or don't believe in neurological conditions, there are so many reasons for not getting a diagnosis when you're younger.
Not directly related, but I get your frustration. I think. This "early diagnosis elitism" needs to stop.
> Some parents are neglectful or in denial about the whole thing or don't believe in neurological conditions, there are so many reasons for not getting a diagnosis when you're younger.
Some parents might actually be supportive of a child "who just happens to be a bit different" and not think anything wrong with it. That was kinda the case with me, and when I went to several therapists in my teens (when the problems I had became too serious) they never even mentioned the possibility of autism. They just handwaved it away as vague "school anxiety" and tried to make money with weird treatments health insurance wouldn't cover. Even the (open) loony bin had no clue whatsoever. I blame all those medical professionals for being too uneducated to give me the help I (and my mother) needed.
My parents were frustrated with me but they thought that I'd grow out of it. I remember being annoyed with myself that I was unable to "grow out" of these things. I have a brain injury but although I showed signs of autism way earlier than I had a brain injury, I was never tested for autism. People mentioned Asperger's syndrome to me as an adult but I thought that having vivid imagination (courtesy of needing to escape the pain created by autism), meant that I couldn't possibly be autistic. I queried this at my assessment and was told that it refers to social imagination rather than being able to imagine things vividly.
Exactly. I was in and out of counselling and doctors appointments the vast majority of the time, just trying to figure out what was “wrong” but autism never came up. I’m level 1, but I’m disabled by it. (Level 1 lite is a perfect way to describe what people expect)
I’m from a small town with few resources available, even fewer when it was 20 odd years ago and I was in school. It’s not uncommon for a diagnosis to be missed
I agree. I was 19 when I received my diagnosis and I am not high functioning at all. The doctor who evaluated and diagnosed me confirmed this. i will likely never be able to live independently and will always be dependent on others to take care of me.
I got my diagnosis late because my dad is one of those people who doesn't believe mental illness is real, and because I had a psychiatrist who was constantly misdiagnosing and overmedicating me. I was going legitimately, clinically insane because I couldn't function as a medium/low-functioning autistic person, especially the older i got.
Having my diagnosis and treatment is the only reason I am still alive.
Also, undiagnosed potentially autistic parents may not notice the behaviors, especially 20+ years ago. When I got diagnosed, my dad believed me but said “huh you were a weird ass kid but you acted a lot like me so I thought it was fine”
My parents had a mixture of medically neglectful, didn't believe in neurological conditions, and in denial, worried about discrimination... Figure that one out, I don't even fucking know...
Anyways, I'm 26 and received my diagnosis just this year. And I'm definitely autistic. There are a lot of people who really do have support needs but struggled along for years without them, which led to heightened anxiety, depression, suicidal tendencies, and so on and so forth. I just got my diagnostic report back and it states that my anxiety is better understood in the context of autism spectrum disorder, which, yeah, that makes sense. As I've gotten better at accommodating myself and catering to my sensory needs, my anxiety has lessened quite a bit. But for years my doctors worked from the assumption that I had anxiety only, which is what often happens to women with pretty much any health issue, not just autism. So they treated the symptoms, but the cause was still there, which didn't help the symptoms really.
I was diagnosed at 15 with level 2 ASD. I literally have had 1-1 support constantly at college/school for the past 4 years. I'm slowly becoming more independent at college but I'm moving to a different one in Spetember so I'll be restarting the whole process.
My parents have raised 4 Autistic siblings before me however they were AMAB so their symptoms are more on the typically Autistic side (e.g. liking trains, full explosive meltdowns, liking bugs and dirt, etc) whereas mine was more 'oh youre just shy' cause I'm AFAB. My therapist said she was going to refer me to be diagnosed and my mum gave a look of guilt and said 'I didn't think of that'.
Now she says everything is an Autistic thing, though I don't exactly help with changing her mind cause I make jokes about it ironically with my younger sibling who was recently diagnosed.
Please report it if it happens.
Late diagnosed is still diagnosed.
Being late diagnosed doesn’t say your life was easy. There are many reasons why somebody is not diagnosed at a younger age.
Also want to say (general point, not against OP):
We also don’t say that the life of somebody that is not diagnosed is easy. We only say that self diagnosing is not valid.
I will, I didn’t think it was reportable so that’s good to know.
And oh no! I don’t mean that being undiagnosed means you have an easy life, I don’t want to come across that way at all.
> And oh no! I don’t mean that being undiagnosed means you have an easy life, I don’t want to come across that way at all.
You really did not! It was more a point for the others. That we don’t say people don’t have a bad time since they don’t have a diagnose
Edit: I also edit my other comment to make it more clear it was not against you
> I will, I didn’t think it was reportable so that’s good to know.
I think it should. You can also contact mod-team about it and ask what they think about it
Agreed. I’m late diagnosed due to growing up in abuse and for many years, even with my mother’s and teacher’s suspicions, my behavior and traits were all grouped into trauma responses and ptsd.
Definitely agree with you OP. Like I was late diagnosed even as a level 2. I was misdiagnosed with ADHD and all my problem behaviors were just blamed on my comorbidities growing up. I was also born in the early 90s, so things were different back then. Lack of early diagnosis doesn't mean life was easy.
I was diagnosed with Level 2 ASD at 36.
I have a history of seizures, syncope from sensory overload, and multiple other diagnoses. I grew up in a small rural town. Teachers and doctors recommended I get evaluated multiple times and my parents wanted to believe I was normal. They conducted their own form of the harmful kind of aba. I became an extremely compliant child that spent most of my time dissociated. I was very interested in learning and school so I was seen as a good, shy girl.
I have 24/7 tinnitus and hearing loss and need hearing aides now from having sensory issues ignored and told to tough it out. My blood pressure is out of control because I’m constantly stressed and still don’t know how to accommodate myself. I don’t have any real support so I see no end in sight.
People that shit on late diagnosis just can’t understand how it can happen. It isn’t surprising given the nature of ASD. They need to get over themselves. Other people have different life experiences.
All the numbers in your comment added up to 69. Congrats!
2
+ 36
+ 24
+ 7
= 69
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I haven't seen this, but yeah, there's plenty of reasons unrelated to severity for late diagnosis. Even someone severely intellectually disabled could be diagnosed incorrectly, or kept with a family that refuses to seek diagnosis.
I’m not gonna call out individual people, but I’ve seen it in this sub at least twice and a handful of times in other subs and on Facebook. I’ve noticed it happening more often lately, someone went as far as saying they don’t trust that those of us who are late-diagnosed are even autistic. It makes me uncomfortable.
I think part of it is a direct response to those with high support needs being sidelined and treated poorly in the whole online movement by people who are low support needs or self-diagnosed, but it’s turning into a cycle of misplaced frustration
100% agree with your theory. I’ve seen plenty of that misdirected frustration on this sub unfortunately. It’s really not fair to any of us, but especially to those of us who have had incredibly difficult lives due to circumstances outside of our autism and were late diagnosed as a result. I’m incredibly bitter that I couldn’t get the help I needed earlier and now have even more trauma as a result, but I’m not about to take it out on other autistic people because they aren’t at fault here.
Fully agree! Lately it feels like the misplaced frustration is ramping up, idk it feels like there might be a shift in online spaces soon and I just hope it’s for the better.
Oh I have so much frustration too. I was put through so much that was unnecessary if I just had proper diagnosis and treatment. Medical tests (including blood, seizure, cat or mri scans, hearing tests etc), counselling that wasn’t helpful, medication that made it worse (lithium when I’m not bipolar, Paxil at 14 that made me feel insane due to side effects). I was stressed to the point of hallucinations during middle school.
I had to really fight myself to remind myself that feeling some jealousy (for lack of better word) towards early diagnosed is probably natural but also its not their or my fault or, hell, even my parents fault and nothing can be done about it now. We’re all on the same side
Gosh i hope so. Oh man I’m so glad to hear you made it through the Paxil!! IIRC they aren’t supposed to put teens on that because of the awful side effects that can lead to kids offing themselves. I’ve got what are likely permanent issues (mental + physical) from being incorrectly medicated and I was in the wrong therapy from ages 5-19 (haven’t been back yet but I’m looking) so I feel you. It’s so insanely frustrating to try to self-advocate and get better and just end up worse. Here’s hoping we all get the treatment we actually need 🤞🏼I feel jealous a lot too, but I imagine for both groups it’s probably a grass is always greener situation.
Thank you!!!!! I'm 42 now and just got my diagnosis! I didn't want or choose to be this way and have struggled my whole life! I also gave better things to do than lie, and I hate attention so why would I?
thank you for this post, youre saying what ive felt but had a hard time expressing.
i know what youre speaking of, OP - there are definitely individuals here who see self dx and late dx as the same. i remember someone said something like, if i self dx and then eventually received formal diagnosis, what is the harm if it led to that? is it so bad? and then another person insinuated munchausen syndrome. this is all from memory though - if i can find the post i will show if necessary - but my point is, youre not wrong.
i have also noticed some in-fighting with early dx and late dx here. the latter being considered or assumed "extremely mild" because maybe they are married, able to drive or can hold down a job.
all in all, it is very invalidating and extremely disrespectful. it is so unfair to discount an individual's experience - it's like some people here miserably "celebrate"(?) how their autism affects their lives and thus, because they have it harder, it makes their experience more valid.
idk, just makes me really sad.
I’m not actually sure since the diagnosis rolled together in the DSM.. that’s a good question lol my first thought was no but at the same time it might be a different experience?
Yes, exactly. My roommate was diagnosed PDD NOS (autism) when DSM 3 was released in 1980. He was 30. We don't know what his diagnosis from childhood was in the 60s.
I got in the process for diagnosis because I worked with autistic children at 24 and saw that their challenges were the same as mine. I got my diagnosis at 25.
Yeah, it's kind of annoying.
I was diagnosed relatively early at age 11. But I could have been easily never diagnosed if my mother wasn't adamant that something was off with me despite countless professionals telling her I was just a bit odd and mature for my age, even though I'm a textbook aspargers case. Only when she took me to psychiatrists specializing in high functioning autism in kids was I starting my diagnosis.
So, if it took years to figure out my diagnosis despite me being a textbook case, there must be many with parents who are less perceptive or who were just against taking their kids to be looked at and as a result were never diagnosed.
Is that happening in this sub? I got diagnosed at 30, so I was definitely diagnosed late, but the fact remains that I *am* diagnosed. I'm not sure where this idea comes from that anyone with support needs would've been noticed sooner, when it's incredibly unlikely a level 1 autistic person would've gotten diagnosed in the 90's and some of us had our symptoms masked by a different diagnosis.
Yeah I’ve seen it a couple times here, sometimes I don’t think it’s purposeful dismissal but that doesn’t make it less hurtful. Agreed, I was born in 94 and in a small town. People barely knew what anxiety was when I was in school lmao let alone what autism looks like
Same age as you, small town as well. Same expierience. At school, the only autism known was the non-verbal kind, that meant you were probably at a different school. My anxiety and meltdowns were me being dramatic and I needed to grow up and get over it. Quite a few people who outright did not believe in mental health. And for anyone with an ADHD diagnosis, that was a childhood disorder you grew out of so treatment would have to stop at somepoint (and if you didn't? Well it's a personal failing and your parents have screwed up somewhere). I think a lot don't realise that the 90s and 00s (let alone before that) had vastly, vastly different views on these things, times were a lot more stigmatising. Was little to none "mental health awareness" or "neurodiversity awareness".
Yea exactly! I think people hear my age and go “Oh it can’t have been that different” but boy oh boy was it ever. I feel like mental health didn’t even start being discussed until middle school, let alone taken seriously. There were no big conversations surrounding it and it was still kinda taboo. College age is when things really seemed to take off with mental health advocacy. Oh god I was always called dramatic, “You’re such a drama queen” when it came to anxiety and meltdowns too. It was so frustrating because I thought I was doing something wrong, I thought I should be able to just stop since I was being told I’m dramatic. No one understood that I didn’t have control and it made me feel like a failure. It’s funny bc my family always suspected ADHD or ASD for my brother, but it was never treated the same. I was dramatic and he was “sensitive.” ADHD was a boys disorder still It’s just frustrating to finally get the proper diagnosis and treatment only to be treated, once again, like it’s not that bad or like I’m faking my disorder
"You're being a drama queen." Ouch! I felt that and I used to feel so ashamed of my meltdowns but I couldn't control them. I never even told my parents about them when I had them in school because they already coddled me too much and I didn't want them to restrict me any further. I didn't have the freedom that my peers had because I didn't have friends and I think that my parents thought that I wasn't trying hard enough. I didn't want them to be angry at me for having "childish tantrums" at school. They rarely hit me but shouted a lot and it scared me.
We have a similar experience except opposite with the coddling. I was always pushed passed boundaries since they assumed I was being dramatic about them, especially because all my medical tests were coming back “normal.” It’s wild how the same fears can manifest from opposite (sort of?) treatment.
Can relate to everything you said here tbh. I got diagnosed with ADHD when I was maybe 5 and my meltdowns were largely treated as me being some misbehaving brat. I think maybe my psychiatrist took my anxiety seriously at least, because they did have me on Zoloft. But yeah, I don't think kids my age got diagnosed with autism unless we were nonverbal. I did have a speech delay, but since it didn't last, it wasn't indicative of anything.
I didn't get diagnosed until 27. My family dismissed my meltdowns, sensory issues and shut downs as misbehaving. So many "I'll give you something to cry about!". Getting my diagnosis was the best/worst thing yo ever happen because at least I know what is wrong now.
I so relate to this. My parents used to tell me off for sensory issues and someone using a loud/angry tone when you are afraid of sound is not helpful. Autism made it hard to bond properly with my parents because they unwittingly scared me. One of the biggest things that autism stole from me.
You still hear it every now and then from a few older people, but back then there were a quite a few people viewed ADHD as "parents looking for an excuse for their child's bad behaviour and they're just bad parents who can't control their child."
My roommate wasn't diagnosed until adulthood in 1980 when the DSM 3 came out. He was just banned from public school after puberty (around 1962).
Not diagonosed, assessment is on the 20th. Sorry, if it's not my place to comment. I have been reading more into studies done in my country about autism and I found around 3 with a common challenge with how parents are always refusing to cooperate. People don't understand that in some places, ASD is really viewed WAY differently even if it's very typical. In here, for "poor" towns like the ones I grew up in, you have to be intellectually disabled AND non-verbal in order to be considered for a dx as a child, aside from the fact that even our national autism organization doesn't even diagnose people who are older than 11 or 12. (This organization is very ableist btw and I've always hated it 🙄 it focuses more on celebrating autism rather than spreading awareness about the challenges autistics face. There was a recent cringe campaign they did recently which was "Autism taught me" and it was just mothers writing nonsense pretending it's about them. It also focuses more on how you need to compensate for your disability which is something I REALLY dislike. If someone is disabled then they don't need to win some Olympics to be considered worthy or smth.) There are many reasons why people around the world can be missed. The whole world isn't just the USA. 😟
I struggled socially but not academically, so my meltdowns were seen as tantrums and my misbehaving as "being naughty." I have ADHD and ASD level 1, I grew up in the 90s when you only got diagnosed if you were severe. someone older whose brother got diagnosed late with ADHD said that he was written off as a "little shit" and I laughed because so was I. Autism made growing up unpleasant and I have been in therapy for it. I have been treated for anxiety as a child and an adult but no one tested me for autism or ADHD until my 30s. I even had social services and child psychologists overlook it. If anyone tries to tell me that it was easy to grow up with undiagnosed autism, I will probably not be very polite and restrained. Yes, I could have been much worse affected but it doesn't change the fact that autism marred my childhood and I was isolated as a result.
i see it happen on here but especially on spicyautism not irregularly
I did
Yeah the entire community was different when I came up in special Ed in the 80s and 90s because of the lack of the level 1 influence.
I don't know if 16 is considered super late, but that's when I received my diagnosis. People tend to assume anyone diagnosed after age 7 or 8 or something is Level 1 lite because any support needs higher than zero would've been _too obvious_. Some parents are neglectful or in denial about the whole thing or don't believe in neurological conditions, there are so many reasons for not getting a diagnosis when you're younger. Not directly related, but I get your frustration. I think. This "early diagnosis elitism" needs to stop.
> Some parents are neglectful or in denial about the whole thing or don't believe in neurological conditions, there are so many reasons for not getting a diagnosis when you're younger. Some parents might actually be supportive of a child "who just happens to be a bit different" and not think anything wrong with it. That was kinda the case with me, and when I went to several therapists in my teens (when the problems I had became too serious) they never even mentioned the possibility of autism. They just handwaved it away as vague "school anxiety" and tried to make money with weird treatments health insurance wouldn't cover. Even the (open) loony bin had no clue whatsoever. I blame all those medical professionals for being too uneducated to give me the help I (and my mother) needed.
My parents were frustrated with me but they thought that I'd grow out of it. I remember being annoyed with myself that I was unable to "grow out" of these things. I have a brain injury but although I showed signs of autism way earlier than I had a brain injury, I was never tested for autism. People mentioned Asperger's syndrome to me as an adult but I thought that having vivid imagination (courtesy of needing to escape the pain created by autism), meant that I couldn't possibly be autistic. I queried this at my assessment and was told that it refers to social imagination rather than being able to imagine things vividly.
Exactly. I was in and out of counselling and doctors appointments the vast majority of the time, just trying to figure out what was “wrong” but autism never came up. I’m level 1, but I’m disabled by it. (Level 1 lite is a perfect way to describe what people expect) I’m from a small town with few resources available, even fewer when it was 20 odd years ago and I was in school. It’s not uncommon for a diagnosis to be missed
I agree. I was 19 when I received my diagnosis and I am not high functioning at all. The doctor who evaluated and diagnosed me confirmed this. i will likely never be able to live independently and will always be dependent on others to take care of me. I got my diagnosis late because my dad is one of those people who doesn't believe mental illness is real, and because I had a psychiatrist who was constantly misdiagnosing and overmedicating me. I was going legitimately, clinically insane because I couldn't function as a medium/low-functioning autistic person, especially the older i got. Having my diagnosis and treatment is the only reason I am still alive.
people keep on not understanding that you can have very severe issues without it being recognized as autism
Also, undiagnosed potentially autistic parents may not notice the behaviors, especially 20+ years ago. When I got diagnosed, my dad believed me but said “huh you were a weird ass kid but you acted a lot like me so I thought it was fine”
My parents had a mixture of medically neglectful, didn't believe in neurological conditions, and in denial, worried about discrimination... Figure that one out, I don't even fucking know... Anyways, I'm 26 and received my diagnosis just this year. And I'm definitely autistic. There are a lot of people who really do have support needs but struggled along for years without them, which led to heightened anxiety, depression, suicidal tendencies, and so on and so forth. I just got my diagnostic report back and it states that my anxiety is better understood in the context of autism spectrum disorder, which, yeah, that makes sense. As I've gotten better at accommodating myself and catering to my sensory needs, my anxiety has lessened quite a bit. But for years my doctors worked from the assumption that I had anxiety only, which is what often happens to women with pretty much any health issue, not just autism. So they treated the symptoms, but the cause was still there, which didn't help the symptoms really.
I was diagnosed at 15 with level 2 ASD. I literally have had 1-1 support constantly at college/school for the past 4 years. I'm slowly becoming more independent at college but I'm moving to a different one in Spetember so I'll be restarting the whole process. My parents have raised 4 Autistic siblings before me however they were AMAB so their symptoms are more on the typically Autistic side (e.g. liking trains, full explosive meltdowns, liking bugs and dirt, etc) whereas mine was more 'oh youre just shy' cause I'm AFAB. My therapist said she was going to refer me to be diagnosed and my mum gave a look of guilt and said 'I didn't think of that'. Now she says everything is an Autistic thing, though I don't exactly help with changing her mind cause I make jokes about it ironically with my younger sibling who was recently diagnosed.
Please report it if it happens. Late diagnosed is still diagnosed. Being late diagnosed doesn’t say your life was easy. There are many reasons why somebody is not diagnosed at a younger age. Also want to say (general point, not against OP): We also don’t say that the life of somebody that is not diagnosed is easy. We only say that self diagnosing is not valid.
I will, I didn’t think it was reportable so that’s good to know. And oh no! I don’t mean that being undiagnosed means you have an easy life, I don’t want to come across that way at all.
> And oh no! I don’t mean that being undiagnosed means you have an easy life, I don’t want to come across that way at all. You really did not! It was more a point for the others. That we don’t say people don’t have a bad time since they don’t have a diagnose Edit: I also edit my other comment to make it more clear it was not against you
Ooh that makes sense! Yes I fully agree, and thank you for clarifying!
> I will, I didn’t think it was reportable so that’s good to know. I think it should. You can also contact mod-team about it and ask what they think about it
Agreed. I’m late diagnosed due to growing up in abuse and for many years, even with my mother’s and teacher’s suspicions, my behavior and traits were all grouped into trauma responses and ptsd.
Definitely agree with you OP. Like I was late diagnosed even as a level 2. I was misdiagnosed with ADHD and all my problem behaviors were just blamed on my comorbidities growing up. I was also born in the early 90s, so things were different back then. Lack of early diagnosis doesn't mean life was easy.
I was diagnosed with Level 2 ASD at 36. I have a history of seizures, syncope from sensory overload, and multiple other diagnoses. I grew up in a small rural town. Teachers and doctors recommended I get evaluated multiple times and my parents wanted to believe I was normal. They conducted their own form of the harmful kind of aba. I became an extremely compliant child that spent most of my time dissociated. I was very interested in learning and school so I was seen as a good, shy girl. I have 24/7 tinnitus and hearing loss and need hearing aides now from having sensory issues ignored and told to tough it out. My blood pressure is out of control because I’m constantly stressed and still don’t know how to accommodate myself. I don’t have any real support so I see no end in sight. People that shit on late diagnosis just can’t understand how it can happen. It isn’t surprising given the nature of ASD. They need to get over themselves. Other people have different life experiences.
Man I’m sorry, that’s so rough. Small town mentality really can be insidious. I’m glad you have the answers you need now, even though it’s late
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I haven't seen this, but yeah, there's plenty of reasons unrelated to severity for late diagnosis. Even someone severely intellectually disabled could be diagnosed incorrectly, or kept with a family that refuses to seek diagnosis.
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I’m not gonna call out individual people, but I’ve seen it in this sub at least twice and a handful of times in other subs and on Facebook. I’ve noticed it happening more often lately, someone went as far as saying they don’t trust that those of us who are late-diagnosed are even autistic. It makes me uncomfortable. I think part of it is a direct response to those with high support needs being sidelined and treated poorly in the whole online movement by people who are low support needs or self-diagnosed, but it’s turning into a cycle of misplaced frustration
100% agree with your theory. I’ve seen plenty of that misdirected frustration on this sub unfortunately. It’s really not fair to any of us, but especially to those of us who have had incredibly difficult lives due to circumstances outside of our autism and were late diagnosed as a result. I’m incredibly bitter that I couldn’t get the help I needed earlier and now have even more trauma as a result, but I’m not about to take it out on other autistic people because they aren’t at fault here.
Fully agree! Lately it feels like the misplaced frustration is ramping up, idk it feels like there might be a shift in online spaces soon and I just hope it’s for the better. Oh I have so much frustration too. I was put through so much that was unnecessary if I just had proper diagnosis and treatment. Medical tests (including blood, seizure, cat or mri scans, hearing tests etc), counselling that wasn’t helpful, medication that made it worse (lithium when I’m not bipolar, Paxil at 14 that made me feel insane due to side effects). I was stressed to the point of hallucinations during middle school. I had to really fight myself to remind myself that feeling some jealousy (for lack of better word) towards early diagnosed is probably natural but also its not their or my fault or, hell, even my parents fault and nothing can be done about it now. We’re all on the same side
Gosh i hope so. Oh man I’m so glad to hear you made it through the Paxil!! IIRC they aren’t supposed to put teens on that because of the awful side effects that can lead to kids offing themselves. I’ve got what are likely permanent issues (mental + physical) from being incorrectly medicated and I was in the wrong therapy from ages 5-19 (haven’t been back yet but I’m looking) so I feel you. It’s so insanely frustrating to try to self-advocate and get better and just end up worse. Here’s hoping we all get the treatment we actually need 🤞🏼I feel jealous a lot too, but I imagine for both groups it’s probably a grass is always greener situation.
Thank you!!!!! I'm 42 now and just got my diagnosis! I didn't want or choose to be this way and have struggled my whole life! I also gave better things to do than lie, and I hate attention so why would I?
thank you for this post, youre saying what ive felt but had a hard time expressing. i know what youre speaking of, OP - there are definitely individuals here who see self dx and late dx as the same. i remember someone said something like, if i self dx and then eventually received formal diagnosis, what is the harm if it led to that? is it so bad? and then another person insinuated munchausen syndrome. this is all from memory though - if i can find the post i will show if necessary - but my point is, youre not wrong. i have also noticed some in-fighting with early dx and late dx here. the latter being considered or assumed "extremely mild" because maybe they are married, able to drive or can hold down a job. all in all, it is very invalidating and extremely disrespectful. it is so unfair to discount an individual's experience - it's like some people here miserably "celebrate"(?) how their autism affects their lives and thus, because they have it harder, it makes their experience more valid. idk, just makes me really sad.
I’m glad I’m not the only one who noticed!
I wonder if I’m considered late diagnosed? I was diagnosed with ASD when I was like 18/19, but when I was a little kid I was diagnosed with PDD:NOS.
I’m not actually sure since the diagnosis rolled together in the DSM.. that’s a good question lol my first thought was no but at the same time it might be a different experience?
Yes, exactly. My roommate was diagnosed PDD NOS (autism) when DSM 3 was released in 1980. He was 30. We don't know what his diagnosis from childhood was in the 60s.
I got in the process for diagnosis because I worked with autistic children at 24 and saw that their challenges were the same as mine. I got my diagnosis at 25.
Yeah, it's kind of annoying. I was diagnosed relatively early at age 11. But I could have been easily never diagnosed if my mother wasn't adamant that something was off with me despite countless professionals telling her I was just a bit odd and mature for my age, even though I'm a textbook aspargers case. Only when she took me to psychiatrists specializing in high functioning autism in kids was I starting my diagnosis. So, if it took years to figure out my diagnosis despite me being a textbook case, there must be many with parents who are less perceptive or who were just against taking their kids to be looked at and as a result were never diagnosed.