Growing out of autism

[Professori]

So, it appears that there are studies which claim that autistic people 'grow out of autism' as they grow older, so much so that they can no longer be classified as autistic - they lose the diagnosis. One study claims that the people they studied did receive an accurate diagnosis of autism in childhood, but they then 'grew out of it'. I will deliberately keep the contents of this study to a minimum due to a lack of space.

To support their claim they administered a battery of tests to assess whether those diagnosed with autism were still autistic after a certain age, plus they interviewed the parents. Test results are very debatable. However, the authors claim that 'these people' did not just grow out of autism on their own, but were assisted in this by parents and therapists.

The problem is that not one of the authors seems to have asked 'these people' about their experiences - not one article features an autistic person commenting on the results or claims of those reports. Not one article reports having asked 'those people' whether they felt that they had grown out of autism. They were not asked if their internal functioning actually agreed with their external behaviour - or with the results of the study. They were not asked what was going on inside them when they appeared outwardly neurotypical.

One independent person did take the trouble to interview those who participated in the experiments, and the response was generally the same, immediate and intense: 'I don't look like I have autism, but I know that I do.'

This is one point of this post: From my personal experience, and I am relatively new to this, I certainly have not 'grown out of' autism/Asperger's after many, many years, and frankly, neither would I want to. In fact, I feel that I have grown into it. I believe that the autism remains, but the people studied simply developed good coping mechanisms to allow them to behave 'naturally', or 'neurotypically.'

Also, it appears that there are many, such as those who 'speak' for 'Autism Speaks', who claim that it is possible for a full autism cure which is the best option or outcome for those with autism - a way to 'save' those with autism 'from the world they are trapped in.' They are fighting on behalf of those who suffer from Asperger's/autism - so they claim.

So, the real question is not whether a cure is actually possible (I personally do not believe it is), but even if there was a cure, how many would accept it? I personally would not want to accept it because Asperger's has become part of my identity, and I do not need saving, but acceptance. I may want relief from some of the more negative symptoms, but that is all.

I would be very interested in opinions and experiences of young and old regarding the above claims.

 

[wanderer03]

I don't think we grow out of autism. It is entirely possible that certain symptoms diminish as we age and gain worldly wisdom to the point where we would not show outward signs. The only way I will show outward signs is when pushed into an area where I feel uncomfortable or forced to socialize. I am hypersensitive to some things and hyposensitive to others. This is not something one grows out of - this is neurological. This study is abysmal! I wonder how it passed an Institutional Review Board (IRB.)

 

[David Larson]

Oh look, the people who aren't okay with us and want us to go away have proven that they can do just that.

Did you catch that sarcasm? If you did, you must not be autistic. Go on, live your neurotypical lives, you're free of the dreaded curse!

Idiotic. Even if there were a cure I wouldn't want it, to be "cured" would be equivalent to getting a frontal lobotomy. I don't want to be one of those people.

 

[Professori]

I don't think we grow out of autism. It is entirely possible that certain symptoms diminish as we age and gain worldly wisdom to the point where we would not show outward signs. The only way I will show outward signs is when pushed into an area where I feel uncomfortable or forced to socialize. I am hypersensitive to some things and hyposensitive to others. This is not something one grows out of - this is neurological. This study is abysmal! I wonder how it passed an Institutional Review Board (IRB.)

I agree and that is a great word for for it - abysmal. The methodology alone is terrible, and I cannot understand how this was even given the opportunity to be viewed.

 

[Professori]

I agree and that is a great word for for it - abysmal. The methodology alone is terrible, and I cannot understand how this was even given the opportunity to be viewed.

I don't think we grow out of autism. It is entirely possible that certain symptoms diminish as we age and gain worldly wisdom to the point where we would not show outward signs. The only way I will show outward signs is when pushed into an area where I feel uncomfortable or forced to socialize. I am hypersensitive to some things and hyposensitive to others. This is not something one grows out of - this is neurological. This study is abysmal! I wonder how it passed an Institutional Review Board (IRB.)

I forgot to mention that there is more than one study suggesting this outcome.

 

[tree]

So, it appears that there are studies which claim that autistic people 'grow out of autism'... I will deliberately keep the contents of this study to a minimum due to a lack of space.

You could link to the studies.
A link takes up very little space.
Some citations would be useful.

 

[Mia]

Some of us learn the extraordinary skills of fitting into a world in which we often feel like spectators, participating only when necessary. We remain on the outside looking in, but never fully at ease in that environment.

Although I have the skills and training to exist in such a world, there is a continuous vigilance to appear normal. There is that deep in drawn breath before I walk into into a room filled with people, the watchful alertness that never quite leaves me. Studying me from a distance one would be able to find no flaws in my performance, yet my anxiety builds to a crescendo dependent on the situation and afterwards an almost entire day of recovery is necessary.

Individuals who hide their true nature, live a kind of half life. As so much energy is given to passing as 'normal.' Before a public performance (doctor's visit, dentist, hairdresser, social evening with friends) I rehearse, the repeated phrases of ordinary life for days, keeping myself awake at night accounting for every eventuality. Not wanting to make any sort of mistake, as I have a horror of not 'doing or saying the correct thing.' Likely ingrained by schooling, religion, and peers from early in my life.

When I retired at fifty-five many of the difficulties I'd experienced as a child returned, they had not been eradicated by existing for so long in the ordinary world. My intense emotions, sensory sensitivities, hyper-empathy, muteness at times, my honesty and naivety, were always inherent but often hidden and explored only when I was alone, somehow made to feel as if those perceptions were wrong. Often wondering why "I was that way." Why I felt everything so deeply, and why I could never forget any slight, insult or veiled sarcasm. Never would it have occurred to me that I was not who I was molded to be, until I began to search and discovered the opposite. I'm glad to know, it helps me to understand who I actually am, it comes late this understanding, but its no less valuable.

 

[Professori]

Some of us learn the extraordinary skills of fitting into a world in which we often feel like spectators, participating only when necessary. We remain on the outside looking in, but never fully at ease in that environment.

Although I have the skills and training to exist in such a world, there is a continuous vigilance to appear normal. There is that deep in drawn breath before I walk into into a room filled with people, the watchful alertness that never quite leaves me. Studying me from a distance one would be able to find no flaws in my performance, yet my anxiety builds to a crescendo dependent on the situation and afterwards an almost entire day of recovery is necessary.

Individuals who hide their true nature, live a kind of half life. As so much energy is given to passing as 'normal.' Before a public performance (doctor's visit, dentist, hairdresser, social evening with friends) I rehearse, the repeated phrases of ordinary life for days, keeping myself awake at night accounting for every eventuality. Not wanting to make any sort of mistake, as I have a horror of not 'doing or saying the correct thing.' Likely ingrained by schooling, religion, and peers from early in my life.

When I retired at fifty-five many of the difficulties I'd experienced as a child returned, they had not been eradicated by existing for so long in the ordinary world. My intense emotions, sensory sensitivities, hyper-empathy, muteness at times, my honesty and naivety, were always inherent but often hidden and explored only when I was alone, somehow made to feel as if those perceptions were wrong. Often wondering why "I was that way." Why I felt everything so deeply, and why I could never forget any slight, insult or veiled sarcasm. Never would it have occurred to me that I was not who I was molded to be, until I began to search and discovered the opposite. I'm glad to know, it helps me to understand who I actually am, it comes late this understanding, but its no less valuable.

Thanks for sharing your insights - very profoundly expressed. I really 'feel your pain' as someone over 60, having been in the same situation and struggling to understand why I felt so out of step with the world until some light was shed through Asperger's assessments. Still, although it is helpful and somewhat comforting to gain some understanding, it does not reduce the pain of years of what could really be described as abuse by a very intolerant, perhaps ignorant society.

I really appreciate your readiness to express your experiences.

 

[Cali Cat]

I'm 54, and learned about my Asperger's at 50. Looking back, I can see how I was much more obviously different when I was younger, but I learned the appropriate coping skills, and can now pass for almost normal. I still have the "issues" of Asperger's to deal with internally, but I can cover myself fairly well in public.

I don't think I'd trade who I am for a "cure." I am what I am. At this point, I don't see how it would make a positive difference.

 

[Mia]

Still, although it is helpful and somewhat comforting to gain some understanding, it does not reduce the pain of years of what could really be described as abuse by a very intolerant, perhaps ignorant society.

Agreed, but in the knowing it lessens the pain dramatically. The pettiness, the intolerance, and sometimes the cruelty come about as misunderstandings on the part of others, misinterpretations seem usual in the ordinary world. People often do not think or even try to understand, societal rules stand in their stead. So there is little consideration required.

Have often thought that the chameleon like qualities that so many Aspies acquire in a lifetime, allow us to pass unnoticed, unremarked, in most places in the world.

 

[Hurting89]

No we just learn to "pass" better as we age. I have to play "pretend NT" most of time and it's draining.

 

[Salmongirl17]

Yes, I believe there is a way to outgrow autism, but honestly it isn't worth going through that process to achieve it.

Ok so I go to my local public school, and always have. When I was younger in elementary school, I was constantly being sent to school counselors because I wasn't "socially normal" with aspergers. That didn't change me. However, in middle school, I became extremely depressed and didn't care about the bullying and the special weirdness that made me, me!! I changed so much, and I felt my old self leaving. Like I have a ton of friends now, but they don't know me as my true self, and I can't show them who I really am because I don't remember who I am. It's like walking around in a totally different person's body.

I've asked some of my friends, and they're really surprised that I'd ever been even suspected of having aspergers.

 

[Sass]

Hmmm, I don't think 'outgrow' is the right word. I was diagnosed at 34, and most people I know were all "I just don't see you like that" because they thought it was good to not appear autistic, and that they were paying me a compliment of some kind. I have no idea what 'that' is, probably some daft conglomeration of movies and tragic posts by awareness groups.

Either way, I think I've found it harder now that I know, although I appear to 'function' quite well. I'm married, I have kids, I work - I must be fine right? Nope.

The things that happen in my head now feel harsher than the things I dealt with as a kid. That could be the immediacy of it all, and that time has made it easier to fuzz the edges of the other, awful things I felt when I was a wee thing, but I would suggest I'm growing *in* to it.

In is not better or easier than out, or better than anything else, but I wouldn't say it has gone. It can't go.

 

[Sass]

Perhaps we don't grow out of it, maybe we just develop ways to hide it?

 

[hazybabe]

It would be interesting to know who commissioned the report (a government agency trying to cut down on adult support?). I can image such a report could be detrimental to such, it kind of left me with the feeling of "if you work really hard and do everything your parents and counsellor say, one day you will grow up and become an nt! As an adult we have more choices to avoid the situations which cause meltdowns and we can choose the social groups we spend time in. When we're in school I think for many of us we are pushed into buildings which hold anxiety for us with many triggers and possibly bullying because we're different. Other than my family I don't really spend time with anyone I was friends with as a child. My closest friend after being told I was diagnosed as an aspie said Yeh but your still you, she spent about half an hour talking about how diagnosis or not she still loved everything about me. I've assimilated as an adult I run the gauntlet everyday. I know my limits now. I know when I'm stressed and need to stay home because im too stressed and risk a melt down. I know I need to take my stone with me everywhere incase I need to hid away and meditate somewhere. Most importantly I've learned to answer questions rather than asking them, that way I don't say anything offensive (although I most often slip up with my family and my best friend but both of them say, not answering that!). For some reason the report kind of reminds me of the camps and treatment centres in America which claim to cure being gay. Parts of us ingrained in every fibre of our being can only ever be covered with a shroud, but never "cured".

 

[Professori]

Hmmm, I don't think 'outgrow' is the right word. I was diagnosed at 34, and most people I know were all "I just don't see you like that" because they thought it was good to not appear autistic, and that they were paying me a compliment of some kind. I have no idea what 'that' is, probably some daft conglomeration of movies and tragic posts by awareness groups.

Either way, I think I've found it harder now that I know, although I appear to 'function' quite well. I'm married, I have kids, I work - I must be fine right? Nope.

The things that happen in my head now feel harsher than the things I dealt with as a kid. That could be the immediacy of it all, and that time has made it easier to fuzz the edges of the other, awful things I felt when I was a wee thing, but I would suggest I'm growing *in* to it.

In is not better or easier than out, or better than anything else, but I wouldn't say it has gone. It can't go.

Exactly. As an 'older' Aspie I definitely feel I have grown into it, as exhibited by the feelings of peace that come from having an identity in it (I don't like the idea of 'diagnosis' because that implies an illness). I certainly did not lose that identity over the years, but just became increasingly unhappy and uncomfortable with stifling my true self.

Revealing that side of me resulted in rejection but I am not prepared to live a lie in order to please others. I think age grants me that privilege .

So much for growing out of autism - the expectation is kind of like growing out of acne.

 

[Tom]

One possibility is that a person does not actually cease having ASD, but instead has learned coping skills, modified behaviors, etc.

I read at least one of these studies some time ago , when they were first published. What I remember was the researchers and subjects qualifying the result and saying that isolated ASD incidents and thoughts still occasionally occurred. In no case was a subject 100% non-autistic. At least that's how I remember it.

 

[Nitro]

Grow out of autism? During my assessment,they used my early childhood developmental history as a part of the determining process,not how I was at the time of it.

The neuropsych world is a series of educated guesses and a very subjective craft to boot.How do they know what is going on inside of someone's head without making up a line of bullsh*t to cover their own a$$


Autism Speaks? Not for the autistic,only seeking to eradicate it and make it go away. Y'all would live rather mundane lives with a lack of creativity if they wipe us out. I would not seek a cure for what I consider a set of gifts for some of us.The profoundly non-verbal autistics may not want cured either...try asking one of them

 

[Professori]

You could link to the studies.
A link takes up very little space.
Some citations would be useful.

Sure, here are two links. The first is the original article, but you will only be able to read the abstract because everyone who wants to read the full article will have to pay for it - unfortunately, that is one of the downsides to the academic world .

http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12037/abstract

The second link leads to an article which reviews a range of autism controversies, one of which deal with this issue. There are further references within the article.

http://www.autismspectrumexplained.com/autism-controversies.html

 

[clg114]

I think that idea that autistic people outgrow autism is ridiculous. I believe that autistic people are born with autism and will be autistic all of their life. One of the things that lead me to believe this is the fact that I was not diagnosed until I was 62 years old. I have always known that I was different than "most people", I just never knew how or why. I saw my diagnosis as a revaluation, it was good to know why I am the way that I am. Over the years, I adapted to a NT world. I am left handed and have become ambidextrous as a result of living in a right handed world. It is the same thing, I am still autistic and I am still left handed and did not out grow ether one.