I believe I have overcome my AS completely. So what now?
I'm 34 now, and when I was young there had barely been any studies conducted into how AS continues to affect adults. But it always seemed to me that my AS was getting better, and I always believed that it would one day no longer affect me at all. Back then there was nobody to contradict this view. I believe I have now been over my AS completely for some years, by which I mean that all the negative aspects of it have been turned around into positives, nullified, or else now present only slight difficulties which would be considered common. Anyone I now tell about my diagnosis is very surprised.
I have recently taken a renewed interest in AS, and been very confused to discover that apparently it is a lifelong condition, whose symptoms can at best be "masked". So what's going on? Was the diagnosis wrong? Did I only have it very mildly? Am I deluded about my progress? Or, have I somehow managed to do something that's supposed to be impossible?
Well, I have little doubt that I really had AS. My weird behaviour was spotted from age 2. I'm told I was utterly obsessed by doors and door mechanisms back when I was too young to still remember it. In nursery I used to ignore group activities completely and go do something else like bounce a ball against a wall. As I grew up I had a lot of trouble with eye-contact, took everything very literally, spaced out during conversations, couldn't concentrate properly on anything I wasn't very interested in, often didn't respond to my name, spoke truthfully and openly and did what I felt like, even when it was highly inappropriate to do so, had a very limited grasp of non-verbal communication and its importance, had bad hand-eye coordination, often (but not always) disliked or rejected physical contact, developed various obsessions such as computer games, and thought about them all the time etc etc.
But was it nonetheless a very mild case? That's something I can't find enough information to judge. What do you think?
I also doubt I'm deluded about my progress. I really do feel like a very different person now. I'm also married with 2 kids, and my wife has never thought of me as having a "condition", even though she knew about the diagnosis. To her it was just an interesting story from my past. I've tried to think about whether I'm simply masking my symptoms, but I really don't think I am. I have observed that I do now vary my body-language and tone of voice automatically in response to a conversation partner, and feel the report this creates on an emotional level (nobody actually taught this to me). I can get a sense of people by watching them, or when a person says one thing but means another. My interactions with people feel genuine, and not like I'm having to "fake it". Just how much would I need to do to prove that I'm not just "compensating" now? I'm getting the feeling that this claim that one cannot grow out of AS is pretty much unfalsifiable!
I really have a great deal more I would like to say about this, but this is already long so I will wait to be asked before posting more. It strikes me that both me and my parents did a lot to help me overcome my AS and grow as a person, some of which was quite unusual.
I am hoping my experiences can be useful to people reading this, especially parents with AS kids. Please let me know if you want to hear more details. I also wonder if any of you know of a good way of volunteering for research into AS.
And finally is there anyone else here who feels they have completely overcome AS? If so, what's your story?
Last edited by JPS on 10 May 2014, 5:10 pm, edited 2 times in total.
I know someone who was diagnosed when he was younger. He was pretty severe on the sensory parts. He was in special education, constantly flapping his hands, and screaming. When he speaks as an adult, he appears NT to me. He is extremely intelligent and well-spoken. There are still difficulties (like how his special interest will take up a lot of his time), yet he is able to hold a decent job. He couldn't get lower wage jobs because he was a bit too logical and honest, but if a lot of us were willing to admit it, low wage job expectations don't make sense. He maintains eye contact, was able to have intercourse with a woman for the first time in the past few years, and only appears to have major troubles with the ability to cook.
He, too, questions if he is even on the spectrum. I think he has had good interventions and was high functioning to the point where he can now appear NT. He doesn't consider this as a mask. I think because he had interventions when young, he developed good coping mechanisms and this is now the "real" him.
When I talked to him, though, his autistic traits become a little more obvious. He is able to talk in a more logical manner, and doesn't seem as worried about how I would perceive him. He's also very optimistic and sometime oblivious, so this probably helps him. It might be helpful to note even though he appears very NT, his friends still find him very annoying.
If you do have AS, your brain is still the same. However, you have probably integrated those coping mechanisms into your way of life so well that you often don't appear that way.
As far as my own story, I was just recently diagnosed. I actually feel "worse" in a lot of areas than when I was younger. I think this is my inability to cope and my lack of a support system. If I had those, I could imagine a totally different "me".
I believe it's lifelong, but terming learning to cope as "masking" or pretending is an unfairly negative twist to a lot of work that went into where you are, a lot of love, and some really good luck.
I also think when one is around people who are accepting that we are more complicated than a label and who see our strengths and don't care to vilify us for or focus on where we may seem off, the strengths become their and our reality. We stop being a label.
I'm really happy for you and glad to read your story. I know I feel far better when I'm being appreciated than looked at funny for minor differences. Thank you for the reminder about this.
I'm thinking that, if your parents had an intuitive understanding of what they were dealing with, then it would be entirely possible for them to teach you the stuff you needed to know, just as they taught you how to tie your shoelaces etc etc.
With behavioural stuff, parents don't usually worry unless they see a problem, and then their likeliest response is to seek professional advice. But, as we all know, the professionals don't really have much useful advice to offer.
As a 'bright' child in the 1950s/60s, I was fast-tracked through school and was bombarded with extra work which I thoroughly enjoyed. ASDs were unheard of in those days, and I believe that the extra attention I received prevented any major behavioural problems from surfacing.
At 15, I freaked out, and left school with an excellent knowledge of Maths, Latin, and how to speak posh, but I had no knowledge at all about how to behave in the real world. At about 17, my parents persuaded the family doctor to refer me to the local Lunatic Asylum in order to bring me into line. Luckily, they chose not to detain me, and after a few 'tests', they told my parents that I was just lazy.
I'm thinking that if your parents worked out at an early stage that you were not getting to grips with social behaviour very well, then it is quite possible that they also worked out that it is 'teachable' in the same way as swimming or astronomy (for example). But it would only be possible with a receptive child - a more seriously hampered individual would not be able to make good use of the extra tuition.
BecauseImArtistic
Yellow-bellied Woodpecker
Joined: 3 May 2014
Age: 37
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I also think when one is around people who are accepting that we are more complicated than a label and who see our strengths and don't care to vilify us for or focus on where we may seem off, the strengths become their and our reality. We stop being a label.
I'm really happy for you and glad to read your story. I know I feel far better when I'm being appreciated than looked at funny for minor differences. Thank you for the reminder about this.
I agree with this. It sounds to me like you have integrated a lot of coping mechanisms, which are working well for you and making your differences, which may have once been disruptive to your life, only "quirks."
I think one problem many autistic people face (all the autistics I know in real life, in fact!) is actually abuse and abusive relationships (especially in the family while growing up), which causes all our traits to be more severe. I am astounded at the number of autistic people who have been abused, either at home or at school. I think that our being different is considered by unscrupulous individuals as an excuse to take their unpleasantness out on. If you were not abused, that can only have helped you to adjust to the NT world faster.
I believe that all autistic people could one day be what people call "functional" - no, every job may not be right for us, but I think there is a job for each of us, if only we knew what it was, and an opening was available, and reasonable(!) accommodations are made. At the very least, I think any autistic person can learn how to create simple meals, communicate (verbally, ASL, or with some kind of text-to-speech device), and generally take care of themselves. I think that it may take us much longer than people normally expect it to take. And I think that abuse can severely delay that learning. I also believe that the way many (most?) autistic people are treated, even if it may be acceptable for NTs, is abusive to us. Forcing us to speak and/or socialize when we are not comfortable doing so, and learn to do things that are extremely difficult and not necessary to us is mistreatment. I know that people will disagree with me on this and I understand completely. This is just the way I feel.
I *don't* believe we can (or should) ever become NT. But I believe that those of us who want to fit in can one day learn the subtleties of fitting in. And those of us who don't can still learn to carve out a space for ourselves in an NT world. Again, I think it could take us a LOT longer to learn these things than NTs would expect. But we do have some wiggle room when it comes to our abilities.
I do not agree with any autistic therapies I have heard of yet, except for this one: Jacob Barnett on youtube - this actually isn't the exact video I was looking for but it is the right boy and his mum, and it says many of the same things - Jacob Barnett's mother didn't feel that his therapies were actually helping him, and she really took a leap and decided to bring him up the way SHE thought was best :) and look how great he's doing now, it makes me feel all warm and fuzzy inside. His mother reminds me of my mother in that way. My mother taught me the way she thought I learned best, and didn't concern herself overmuch with my delayed social skills, but rather focussed on my strengths. I think that it made a huge difference to how well I can function now. However, I was also abused by other members of the family and kids/teachers at school, and later by boyfriends. And I think that that abuse contributed directly to the severity and frequency of my meltdowns. Just as we can get ahead with some understanding and accommodations, I think we can go backwards when we are abused and hated.
I also think when one is around people who are accepting that we are more complicated than a label and who see our strengths and don't care to vilify us for or focus on where we may seem off, the strengths become their and our reality. We stop being a label.
I'm really happy for you and glad to read your story. I know I feel far better when I'm being appreciated than looked at funny for minor differences. Thank you for the reminder about this.
I agree with this. It sounds to me like you have integrated a lot of coping mechanisms, which are working well for you and making your differences, which may have once been disruptive to your life, only "quirks."
I think one problem many autistic people face (all the autistics I know in real life, in fact!) is actually abuse and abusive relationships (especially in the family while growing up), which causes all our traits to be more severe. I am astounded at the number of autistic people who have been abused, either at home or at school. I think that our being different is considered by unscrupulous individuals as an excuse to take their unpleasantness out on. If you were not abused, that can only have helped you to adjust to the NT world faster.
I believe that all autistic people could one day be what people call "functional" - no, every job may not be right for us, but I think there is a job for each of us, if only we knew what it was, and an opening was available, and reasonable(!) accommodations are made. At the very least, I think any autistic person can learn how to create simple meals, communicate (verbally, ASL, or with some kind of text-to-speech device), and generally take care of themselves. I think that it may take us much longer than people normally expect it to take. And I think that abuse can severely delay that learning. I also believe that the way many (most?) autistic people are treated, even if it may be acceptable for NTs, is abusive to us. Forcing us to speak and/or socialize when we are not comfortable doing so, and learn to do things that are extremely difficult and not necessary to us is mistreatment. I know that people will disagree with me on this and I understand completely. This is just the way I feel.
I *don't* believe we can (or should) ever become NT. But I believe that those of us who want to fit in can one day learn the subtleties of fitting in. And those of us who don't can still learn to carve out a space for ourselves in an NT world. Again, I think it could take us a LOT longer to learn these things than NTs would expect. But we do have some wiggle room when it comes to our abilities.
I do not agree with any autistic therapies I have heard of yet, except for this one: Jacob Barnett on youtube - this actually isn't the exact video I was looking for but it is the right boy and his mum, and it says many of the same things - Jacob Barnett's mother didn't feel that his therapies were actually helping him, and she really took a leap and decided to bring him up the way SHE thought was best and look how great he's doing now, it makes me feel all warm and fuzzy inside. His mother reminds me of my mother in that way. My mother taught me the way she thought I learned best, and didn't concern herself overmuch with my delayed social skills, but rather focussed on my strengths. I think that it made a huge difference to how well I can function now. However, I was also abused by other members of the family and kids/teachers at school, and later by boyfriends. And I think that that abuse contributed directly to the severity and frequency of my meltdowns. Just as we can get ahead with some understanding and accommodations, I think we can go backwards when we are abused and hated.
I think you are correct. My abuse directly slowed the development of my positive traits, too. Without the influence of my family, I'm able to progress much faster in life.
IMHO it's a matter of severity, developing coping skills, and finding a good niche. I'm also married with two children, and currently work full time. I am also slowly developing reciprocal relationships. It's not overcoming or outgrowing my AS, though. It's finding ways to work with it.
There so many varying levels of Aspergers and it appears you assume everyone else has the same level of AS as you do. I am sure that your nurturing background and mildness has alot to do with your assumption but everyone is not blessed to be raised in such an environment and some people have a more severe level of AS.
I thought the OP was feeling same shock I felt coming across some of the awfulness written about people with ASD being incapable of concern or empathy ever or of contributing anything of value. The phrasing about masking, saying that his interactions feel genuine (why wouldn't they? they are), asking if he is he faking it seems like he maybe came across websites where possibly neurotypical partners bash people with ASD.
It's not unusual for someone to "lose" their diagnosis as they get older--to move from a clinically diagnosable case to a sub-clinical one.
Autistic people develop their skills, too, and in your case, it looks like you developed skills in those areas that are particular weaknesses for those with autism, leaving you in the low-normal to normal range, without any disability.
You probably still have AS traits--that's the case for most people who were diagnosed as children but aren't diagnosable as adults--but that's not the same thing as being autistic. You're more of a spectrum cousin now; you share a cognitive style with autistic people, but you don't have a disability, and so you don't need a diagnosis.
People have this idea that autism always stays the same, that autistic people don't learn, that autistic children don't develop new skills as they grow up. Well, they do; we learn and grow like anybody else does. Some of us just learn faster than others, or develop in the right direction. A friendly environment gives a child the best bet to end up with a workable skill set, whether that's a competent, happy autistic adult or a neurotypical with autistic traits.
Kids' brains are works in progress. Some autistic kids, usually with mild cases, grow up and lose their autism diagnosis. They usually have something in common with autistics. They may even have more in common with autistics than with neurotypicals. The main difference is that they no longer have any traits that cause a significant impairment, and so they don't need a label.
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Autistic people develop their skills, too, and in your case, it looks like you developed skills in those areas that are particular weaknesses for those with autism, leaving you in the low-normal to normal range, without any disability.
You probably still have AS traits--that's the case for most people who were diagnosed as children but aren't diagnosable as adults--but that's not the same thing as being autistic. You're more of a spectrum cousin now; you share a cognitive style with autistic people, but you don't have a disability, and so you don't need a diagnosis.
People have this idea that autism always stays the same, that autistic people don't learn, that autistic children don't develop new skills as they grow up. Well, they do; we learn and grow like anybody else does. Some of us just learn faster than others, or develop in the right direction. A friendly environment gives a child the best bet to end up with a workable skill set, whether that's a competent, happy autistic adult or a neurotypical with autistic traits.
Kids' brains are works in progress. Some autistic kids, usually with mild cases, grow up and lose their autism diagnosis. They usually have something in common with autistics. They may even have more in common with autistics than with neurotypicals. The main difference is that they no longer have any traits that cause a significant impairment, and so they don't need a label.
This doesn't make sense to me. Also, isn't this what autistic people usually fight against? The idea that you "outgrow" it when you're older? It seems to be that his brain is the same, but he received good intervention, and thus developed better than some of us.
Fake it till you make it.
Sounds cliche, but it works. I'm definitely on the spectrum and annoy people from time to time, am logical, blunt, and not spontaneous, but I have developed a lot of coping mechanisms that allow me to have a reasonably normal social life. Most people don't want to be my friend, but only people who have interacted a lot with me are not surprised when I tell them about my AS.
Let me reiterate what the rest have been saying about early intervention and a good support system. The former is definitely the bad tasting medicine I needed. I hated my childhood, and have a permanently scarred self-esteem because of it, but without my parents' brutal honesty and strict discipline, I would have gone nowhere.
I'm now a medical student. I'm not the most well-liked person in my class and I'm not without my struggles, but I'm passing with flying colours, even the practical bit that requires rapport-building.
So as a fellow aspie who has overcome a lot and now just comes across as maybe a bit weird and sometimes annoying, you might just be doing a few subconscious things that are minor enough that your friends tolerate it, but your brain is still the same so I'm skeptical that you made a total 180. I'm impressed though!
Sounds cliche, but it works. I'm definitely on the spectrum and annoy people from time to time, am logical, blunt, and not spontaneous, but I have developed a lot of coping mechanisms that allow me to have a reasonably normal social life. Most people don't want to be my friend, but only people who have interacted a lot with me are not surprised when I tell them about my AS.
Let me reiterate what the rest have been saying about early intervention and a good support system. The former is definitely the bad tasting medicine I needed. I hated my childhood, and have a permanently scarred self-esteem because of it, but without my parents' brutal honesty and strict discipline, I would have gone nowhere.
I'm now a medical student. I'm not the most well-liked person in my class and I'm not without my struggles, but I'm passing with flying colours, even the practical bit that requires rapport-building.
So as a fellow aspie who has overcome a lot and now just comes across as maybe a bit weird and sometimes annoying, you might just be doing a few subconscious things that are minor enough that your friends tolerate it, but your brain is still the same so I'm skeptical that you made a total 180. I'm impressed though!
I don't think "discipline" is such a good idea. There are ways we can help autistic children without scaring their self-esteem permanently. That said, I'm glad you're in a good place now. In my case, my mother's "discipline" was actually extreme abuse. Trying to punish someone out of a problem they can't help is stupid to me.
Do you think the discipline you experienced resulted in you going into a profession that can often make people suicidal? I know medical schools still have a lot of "hazing" type of activities and bullying. I wonder if you are somewhat "immune" to it now.
Hmm, my parents were authoritative (just the right balance of permissiveness and discipline) and I am also a very academically successful person right now. Somehow, I gained intrinsic motivation at the beginning of high school, realizing that I need to work hard to develop myself or I won't make it anywhere in life. I never aspired to "fake it", but I did strive to understand other people and myself better, as well as to develop certain skills that came more naturally to me while compensating for areas where I couldn't manage in the same way.
People tell me now that they can see that I'm on the spectrum, but I'm not "impaired" on a global scale because of what I've been able to achieve.
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Leading a double life and loving it (but exhausted).
Likely ADHD instead of what I've been diagnosed with before.