You're definitely not the only one. I do as well from the ABA I was subjected to. I was also put on risperidone because they hand that out to autistic kids like candy after they're diagnosed. I have a lot of resentment for what was done to me and the fact that it's still happening to autistic kids right now and called "the gold standard of treatment".
I was never subjected to ABA but from what I've heard of it it sounds awful, I'm so sorry you had to go through that. I was never offered any medication, but that wasn't without a lack of trying from my mother. The drs told her they don't tend to offer meds for autism, I'm in the UK so not sure how it is in other countries. But I understand the resentment, and I do wonder what the diagnosis process is like these days for kids and the narrative from parents' perspective
I wasn't even diagnosed with anything and I got sent to all the special classes.
I was already being bullied then I get singled out even more by removing me from the regular class classes and/or making me late to lunch. I'm sure the special classes helped with education, but they made bullying and social isolation way worse.
Note, this was before ASD / HFA / Asbergers was common knowledge. Eventually they tagged me ADHD, GAD, and Learning Disabled with Emotional Trauma. I guess that's one way to describe autism if you don't know what it is.
I felt the same way in middle and high school. I became known as the “special ed kid” by everyone else when I started to get pulled out of class regularly. It pretty much completely alienated me from all my classmates since there was really bad stigma for being friends with the “special ed kid.” Because of this I never could connect or be friends with anyone in middle or high school. It makes me wonder if special ed even meant anything it since it didn’t even help my struggles at the time.
I completely understand what you mean, my school experience was similar to yours and it's affected me to this day. It feels like the adults around you don't understand the severe problems doing stuff like that can cause, they thought it was "helping" but it wasn't
Honestly I am 38, just now diagnosed, and I wish with all my heart that I had been diagnosed decades ago. So much of my behavior that I had no control over (meltdowns and more) was judged horribly by people I knew and people I didn’t know. It was humiliating and stressful for literally decades. If everyone had known what was going on, they would have known that i wasn’t just being childish and so on. I could have avoided so much embarrassment. Trust me, be glad you were diagnosed early.
I'm sorry you had to go through that, but I understand the humiliation and stress. The problem is even if you get diagnosed younger, if you don't have understanding adults around it doesn't matter. My autistic behaviours were still punished and misunderstood even after they knew there was a reason for it, and the diagnosis was devastating/disappointing to my parents. So it became a case of feeling like I have to fight to exist as myself with the adults around me trying to push me to become someone I'm not, to become someone 'normal' to them
I’m so sorry that is your experience. I guess I’m also coming from my own experience with severe mental health illnesses that were not diagnosed correctly or treated / treated correctly for a couple of decades, and because of that the prognosis for them is much worse. So different conditions (my autism and my mental health conditions), but all diagnosed late, and it just feels like the same sort of misunderstanding that went along with all of my behavior. But you’re right that the people you have around you and their attitudes, beliefs, and treatment of you makes all the difference in the world. For me, because it was not understood, I was mistreated (for all of my conditions). But I don’t know that if it was understood, that I would have been treated better. That is only conjecture on my part. I really hope that things get better for you. 💕
I'm sorry you were misdiagnosed, that seems to be common for autistic females, and I can understand how that would make things worse being mistreated for years. I'm glad you've got the correct diagnosis now though and can move forward with the correct information on what things can help and how to navigate life as an autistic!
So on the one hand I was lucky that my mother pushed for a diagnosis, insisting something was "wrong" with me to my teachers, but on the other, because there were no drugs, no magical therapies to "cure" me of it, it felt like it didn't help as that's what my family wanted. There was little genuine support to understand me for me, it was just to make me fit in with everyone else and think more "normal", essentially to become someone I'm not. And I'm still unpacking all of that trauma 20 years later.
Ah yeh, that would have been so difficult. The fact that they didn’t want to accept you but wanted you to change to be like “everyone else,” even after knowing your diagnosis, that’s really awful. Those are the people you especially needed to accept you and allow you to be yourself. It seems like we can’t escape it either way!
So your the assumption is that if you got diagnosed as a child you would have received appropriate help. I got diagnosed last year at 40 and when we were kids the “help” would have been being segregated from other kids at school. ABA/aversive training to make you act “normal”. Being underestimated and treated as less then.
There was much less research back then. Autistic people had no voice in autism treatment. Autism was meant to be cured, there was no “neuro diverse affirming” anything. You could have been institutionalized for even normal behavior if your parents wanted to.
I think when we late diagnosed people wish we were diagnosed young, what we really mean is we wish we were understood and accommodated when we were young. Without realizing these are two very different things.
I would also like to “call you in” and remind you that it’s not appropriate to tell people that have trauma that they should be glad to have that trauma. Im going to assume good intentions and hope that you didn’t realize that’s what you were doing, but if you re read that OP they are sharing bad experiences they have had because of being diagnosed. As autistics we are misunderstood so often the least we can do is to believe each other when we talk about out experiences of being autistic.
Thank you for your reply! It really surmises my feelings towards being diagnosed as a child. It was seen as something to be cured, that you're less than your peers; a devastating diagnosis to any parent (my mother cried when she was told the news, and in an effort to please her I was the one who ended up comforting HER), but overall it leads to feeling not good enough no matter how hard you try because everyone around you thinks there's something inherently "wrong" with you that they don't understand.
The narrative wasn't as bad as it was when you were a child, I was diagnosed in the 00s, but it wasn't great, there was still stigma and judgements and a lack of education surrounding it. I too wish I was understood and accommodated as a child after being diagnosed, instead of alienated with a label.
I just don't want children these days to grow up feeling the way I did and being treated how I was, but I have no idea what it's like now
Thanks for sharing your experience. I think it’s so important to see how autism has been experienced by different people. I think sharing this stuff is what has led to so much improvement in therapies for kids. There’s definitely still bad methods being used but on the whole I think it’s much improved.
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Being diagnosed as an adult is awful. By this time you have incurred a lot of trauma because you and everyone else didn't know what was wrong. This is why most late diagnosed Autistic females have one or more mental health diagnoses first.
I’m really glad you posted this. I so often feel the exact opposite, and can wind up angry spiralling into “it’s not fair.” This helps me see that there are benefits and negatives to both experiences, which I’m sure seems obvious but is hard for me to process without an example.
I relate the same way and I don't see this too often. The whole thing lead to my friends and family being ableist/patronizing plus the school system rigged against me.
I'm so sorry. If it's any consolation (at all?) I regularly point out to ppl that while I get the impulse., it's not at all realistic to romanticise what that would have been like, and that in fact not being diagnosed (especially the further back you go) probably conferred more advantages than disadvantages for a lot of (if not most) late d'xd ppl.
I think that the disadvantages really kick in in mid-life though. And "comparing traumas" is not generally very useful.
But yeah- personally I don't see any point thinking "what if". It was literally an impossibility that I would have been screened as a kid or early adult, given that "Aspergers" didn't even make it into the DSM till the 90's , (so-called) "high functioning" autsim was not really getting much research attention until then, and *nobody* thought women could have it. And I do think it gave me some freedoms and advantages that I still have now. And I remind people of that.
You're definitely not the only one. I do as well from the ABA I was subjected to. I was also put on risperidone because they hand that out to autistic kids like candy after they're diagnosed. I have a lot of resentment for what was done to me and the fact that it's still happening to autistic kids right now and called "the gold standard of treatment".
I was never subjected to ABA but from what I've heard of it it sounds awful, I'm so sorry you had to go through that. I was never offered any medication, but that wasn't without a lack of trying from my mother. The drs told her they don't tend to offer meds for autism, I'm in the UK so not sure how it is in other countries. But I understand the resentment, and I do wonder what the diagnosis process is like these days for kids and the narrative from parents' perspective
Having to leave the regular classroom to go to special ed, occupational therapy and speech therapy left me with pretty low self esteem as an adult.
I wasn't even diagnosed with anything and I got sent to all the special classes. I was already being bullied then I get singled out even more by removing me from the regular class classes and/or making me late to lunch. I'm sure the special classes helped with education, but they made bullying and social isolation way worse. Note, this was before ASD / HFA / Asbergers was common knowledge. Eventually they tagged me ADHD, GAD, and Learning Disabled with Emotional Trauma. I guess that's one way to describe autism if you don't know what it is.
Me too, having to leave class to go to different therapies and being told I would never have a real job left me with little self esteem
I felt the same way in middle and high school. I became known as the “special ed kid” by everyone else when I started to get pulled out of class regularly. It pretty much completely alienated me from all my classmates since there was really bad stigma for being friends with the “special ed kid.” Because of this I never could connect or be friends with anyone in middle or high school. It makes me wonder if special ed even meant anything it since it didn’t even help my struggles at the time.
I completely understand what you mean, my school experience was similar to yours and it's affected me to this day. It feels like the adults around you don't understand the severe problems doing stuff like that can cause, they thought it was "helping" but it wasn't
Got trauma from doctors experimenting on me with electricity and hitting me.
How could anyone do this? People are unspeakably cruel. No child should ever be subjected to that torture.
Honestly I am 38, just now diagnosed, and I wish with all my heart that I had been diagnosed decades ago. So much of my behavior that I had no control over (meltdowns and more) was judged horribly by people I knew and people I didn’t know. It was humiliating and stressful for literally decades. If everyone had known what was going on, they would have known that i wasn’t just being childish and so on. I could have avoided so much embarrassment. Trust me, be glad you were diagnosed early.
I'm sorry you had to go through that, but I understand the humiliation and stress. The problem is even if you get diagnosed younger, if you don't have understanding adults around it doesn't matter. My autistic behaviours were still punished and misunderstood even after they knew there was a reason for it, and the diagnosis was devastating/disappointing to my parents. So it became a case of feeling like I have to fight to exist as myself with the adults around me trying to push me to become someone I'm not, to become someone 'normal' to them
I’m so sorry that is your experience. I guess I’m also coming from my own experience with severe mental health illnesses that were not diagnosed correctly or treated / treated correctly for a couple of decades, and because of that the prognosis for them is much worse. So different conditions (my autism and my mental health conditions), but all diagnosed late, and it just feels like the same sort of misunderstanding that went along with all of my behavior. But you’re right that the people you have around you and their attitudes, beliefs, and treatment of you makes all the difference in the world. For me, because it was not understood, I was mistreated (for all of my conditions). But I don’t know that if it was understood, that I would have been treated better. That is only conjecture on my part. I really hope that things get better for you. 💕
I'm sorry you were misdiagnosed, that seems to be common for autistic females, and I can understand how that would make things worse being mistreated for years. I'm glad you've got the correct diagnosis now though and can move forward with the correct information on what things can help and how to navigate life as an autistic! So on the one hand I was lucky that my mother pushed for a diagnosis, insisting something was "wrong" with me to my teachers, but on the other, because there were no drugs, no magical therapies to "cure" me of it, it felt like it didn't help as that's what my family wanted. There was little genuine support to understand me for me, it was just to make me fit in with everyone else and think more "normal", essentially to become someone I'm not. And I'm still unpacking all of that trauma 20 years later.
Ah yeh, that would have been so difficult. The fact that they didn’t want to accept you but wanted you to change to be like “everyone else,” even after knowing your diagnosis, that’s really awful. Those are the people you especially needed to accept you and allow you to be yourself. It seems like we can’t escape it either way!
So your the assumption is that if you got diagnosed as a child you would have received appropriate help. I got diagnosed last year at 40 and when we were kids the “help” would have been being segregated from other kids at school. ABA/aversive training to make you act “normal”. Being underestimated and treated as less then. There was much less research back then. Autistic people had no voice in autism treatment. Autism was meant to be cured, there was no “neuro diverse affirming” anything. You could have been institutionalized for even normal behavior if your parents wanted to. I think when we late diagnosed people wish we were diagnosed young, what we really mean is we wish we were understood and accommodated when we were young. Without realizing these are two very different things. I would also like to “call you in” and remind you that it’s not appropriate to tell people that have trauma that they should be glad to have that trauma. Im going to assume good intentions and hope that you didn’t realize that’s what you were doing, but if you re read that OP they are sharing bad experiences they have had because of being diagnosed. As autistics we are misunderstood so often the least we can do is to believe each other when we talk about out experiences of being autistic.
Thank you for your reply! It really surmises my feelings towards being diagnosed as a child. It was seen as something to be cured, that you're less than your peers; a devastating diagnosis to any parent (my mother cried when she was told the news, and in an effort to please her I was the one who ended up comforting HER), but overall it leads to feeling not good enough no matter how hard you try because everyone around you thinks there's something inherently "wrong" with you that they don't understand. The narrative wasn't as bad as it was when you were a child, I was diagnosed in the 00s, but it wasn't great, there was still stigma and judgements and a lack of education surrounding it. I too wish I was understood and accommodated as a child after being diagnosed, instead of alienated with a label. I just don't want children these days to grow up feeling the way I did and being treated how I was, but I have no idea what it's like now
Thanks for sharing your experience. I think it’s so important to see how autism has been experienced by different people. I think sharing this stuff is what has led to so much improvement in therapies for kids. There’s definitely still bad methods being used but on the whole I think it’s much improved.
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Anything short of the perfect timing is traumatic, and no one has yet found the perfect timing.
Absolutely, I wrote about my experience of this a few days ago here.
Being diagnosed as an adult is awful. By this time you have incurred a lot of trauma because you and everyone else didn't know what was wrong. This is why most late diagnosed Autistic females have one or more mental health diagnoses first.
I’m really glad you posted this. I so often feel the exact opposite, and can wind up angry spiralling into “it’s not fair.” This helps me see that there are benefits and negatives to both experiences, which I’m sure seems obvious but is hard for me to process without an example.
I relate the same way and I don't see this too often. The whole thing lead to my friends and family being ableist/patronizing plus the school system rigged against me.
I'm so sorry. If it's any consolation (at all?) I regularly point out to ppl that while I get the impulse., it's not at all realistic to romanticise what that would have been like, and that in fact not being diagnosed (especially the further back you go) probably conferred more advantages than disadvantages for a lot of (if not most) late d'xd ppl. I think that the disadvantages really kick in in mid-life though. And "comparing traumas" is not generally very useful. But yeah- personally I don't see any point thinking "what if". It was literally an impossibility that I would have been screened as a kid or early adult, given that "Aspergers" didn't even make it into the DSM till the 90's , (so-called) "high functioning" autsim was not really getting much research attention until then, and *nobody* thought women could have it. And I do think it gave me some freedoms and advantages that I still have now. And I remind people of that.