Not buying the "neurotype" thing.

Post Reply New Topic

I agree with you.

Most autistic people offline talk mostly about social deficits as their biggest problem in life. This goes for people I know, and people others know. Hardly anyone mentions sensory or EF issues. It is only on forums that social is deemphasized. Ackshuly social deficits are most important to autistic people and central core of autism.

I would be very interested in hearing your story. Please post it if you are ok to share it.

That's kind of what I figured.



I'm familiar with her; I don't know that it's right to say that her autism made all of that possible, because that isn't something we can know. It may have but the most it can be is speculation. I have one of her books, I still haven't gotten around to reading it.

I'm more inclined to accept that than I am claims of people who were never diagnosed with autism being examples of this. I have seen attempts to sort of “lay claim” to such people.

As regards to autism not having to be a disability, I disagree. Something that causes such reactions to what ought to be benign stimuli, stunts social interaction (humans are a social species, and “social” and “society” have the same etymological roots for a reason), etc. sounds to me like the definition of a disability. How someone approaches these things obviously differs widely. How we are able to adapt and overcome also differs. Some are more able to do so than others, some have different approaches, etc.

Basically...



… this.



I'm sure it varies from one case to another. It's certainly the case for me. Sensory issues are still something I deal with. Bright lights leave me feeling uneasy after a while, sudden loud noises scare the crap out of me and I'm very sensitive to temperature. But I got therapy to mitigate a lot of these things pretty young and found workarounds for the issues that were left. The social issues have been much harder to tackle and left a much larger impact on my life than having to wear a coat inside sometimes and jumping out of my seat if someone drops something heavy. So I just don't think to talk about these things all that much.



Sure. See, when I was little my dad had already had to deal with mental health issues from my mother's side of the family, so as soon as he noticed I was acting unusually he put a ton of effort into working out why and what to do about it .I was diagnosed at 5 with whatever preceded Asperger Syndrome as a diagnosis. This would be 1991. The DSM-IV wasn't even published for another three years.

That means that a lot of these resources, communities and such weren't even available. There wasn't as much understanding of autism at the time. So we all kind of figured it out as we went; I got help with what I could. What there wasn't any help for? I had to work it out for myself. I had to try a lot of different things and put myself through a lot of pain to do that. Having knowledge of the source of these difficulties helped a lot. Having such early knowledge in an environment where nobody was suggesting it was a good thing didn't make me view those difficulties positively though. They were (and to me, still are) seen as something to be overcome and conquered rather than embraced.

There are actually people I resent for not pushing me a little harder to get into social situations and out of my comfort zone even though it would have been stressful. I have to tell myself they meant well.

So it can be hard for me to remember that most people with a diagnosis got it much later than I did and in a very different environment. On top of that, it's hard for me to think other higher-functioning folks can't do what I did with this stuff and sometimes “can't” turns to “won't” in my mind. I'll forget that most of them haven't had 25 years to work on these things and haven't had the same incentives to do so.

A lot of what I've heard from neurodiversity advocates feels like it's saying all that shouldn't have been, that the people whose help I'm still grateful for was wrong or misguided, and that my efforts have been pointless. When I say that's how I feel a lot of them get dismissive or even offended. So I've avoided the topic for years now, but if I'm in a place like this I can't do that. I need to adapt to this situation, too.

I didn't say that autism is not a disability in many cases. It most definitely is, and services are essential.

I'm saying there are times when it isn't one. I'm also saying that what is perceived as a disability by the general society might not be one in actuality, when relatively objective consideration is employed.

If somebody invents something through autistic modes of thought, it is not a manifestation of a disability, since an eminently positive result was obtained through this mode of thought.

Thank you for sharing your story. It is really good and helpful when we can see each other's perspectives and how we were brought up and shaped to have the understandings that we have. We are not supposed to have good theory of mind but I think we have more than they give us credit for.

I was one of those people who was found out very late. I am in my late 40's and I only found out about being Autistic about three years ago. And I was officially diagnosed exactly one year ago. I also grew up in a time where High Functioning Autism/Asperger's was not known. Unlike yourself, however, no one knew enough to notice that there was anything wrong with me. They just figured I was a little different and no one knew the signs to look for. And I think my parents were pretty clueless to these kinds of differences anyway. But it's not entirely their fault. Even though as a very young kid I was very social, mostly because I liked the activity we were playing when I was playing with other kids, not necessarily the fact that other kids were there, I also spent a lot of time alone in my room.

Any time I had an Autism related issue or a Mishphonic issue, I developed Misophonia at 10, my parents or adults in my life just assumed I was being a brat or rude or misbehaving in some way so I just got punished. So I had to learn to basically be a closet Aspie/Misophone which meant spending most of my time alone by choice. I developed my own coping mechanisms to survive and since I was not actually taught coping mechanisms, some of mine are not the most socially acceptable ways to do things. But like my husband likes to point out, I was pretty much raised by our cats.

Because I did not have any kind of intervention or help at all for my Autism or Misophonic issues, there were basic skills and basic human bonding experiences that I never had. And with finding out that I was Autistic and Mishophonic at the tender age of almost 50, gives me a different perspective of what I am able to overcome and what I just have to accept and understand are limitations for me. But I find that understanding that I have limitations and being able to respect them is very liberating and very empowering.

I also consider myself disabled. Many people see me and before they have a chance to get to know me they try to convince me, because of my physical appearance, that I am not disabled. I have even been told, "The only thing that puts you on the Autism Spectrum is that you are a little socially awkward. You should not consider yourself an Autistic person but rather just a normal person who has a couple of Autistic tendencies." People love to tell me not to consider myself disabled. When they say things like that I have to remind myself that they don't know anything about me. People who are normal who just have little social awkwardness don't have the police at their doors on a regular basis because 911 keeps getting calls that they want to commit suicide because someone is playing a stereo too loud and then need days or weeks to recover from sensory overstimulation. People who are just a little socially awkward don't spend a half a century trying to work and never being able to hold down a job for more than a year at a time because of all kinds of sensory issues, communication deficits, and weird and inappropriate repetitive behaviours and inabilities to adjust to changes in the routines and environments and inabilities to deal with things in a non rigid way, or have severe on and off executive functioning issues. People who are just a little socially awkward don't have a super strong child/adult personality issue which makes adult peer relationships a potential nightmare. People who are just a little socially awkward don't tend to have selective mutism or speech and basic skills deterioration when stressed. And the list goes on.

So I agree 100% with you that for me, personally, Autism is a disability. I consider myself a disabled person because the things that I suffer from on a daily basis and which greatly impair my life every single day are directly because I have an ASD. Now, there are also things that are directly because I have an ASD that are wonderful and phenomenal and that I am sure I would not have if I did not have an ASD. Things like the child/adult personality. This is one of the most endearing qualities about me that people love. Some people hate me for it because it freaks them out. Those who love me think it's magical and wonderful and hope I never lose it. I also love how I see colors and patterns and how the simplest things can really make me happy and excited. Some of the things that are the hardest are also things l love the most. I love that I can hear as well as I can because when I am in the woods or by the water I love being able to hear so much. And there are many other things I love about being Autistic. It is who I am. But it is still a disability and the impairing parts are huge and very difficult and they can make daily existence sometimes seem like an insurmountable task.

But I also understand the perspective of those who want to say it's just a difference. I get where they are coming from. I think it might be possible to see it both ways. I think I can say it's just a difference in the sense that it is not something people should be afraid of, or that they should treat me badly for it or that they should see it as some horrible disease.

I kind of like the definition of it being a social disability. What that means is that if society would change we as Autistics would not suffer nearly as much as we do and we would not be impaired nearly as much as we are. Like a physical disability or medical disability would be like I can't walk. That is something that my body as a human being should be able to do. It has nothing to do with how society functions. But a social disability has to do with how society functions. For instance, I am only impaired by not making eye contact because society expects me to. If society did not care about eye contact, the fact that I have difficulty with it would not matter. I am only impaired by people's stereos only because I can hear them. If they wore headsets rather than blasting them to high heaven, people's stereos would not impair me. If it was acceptable in society for people to be naked if they wanted to, we would not be impaired by how our clothes feel.

Now of course there are some things in Autism that we might struggle with no matter what society thinks or what the social rules are but I think that if social rules were different, we would certainly struggle a lot less.
But I see where you are coming from as well and I am glad that you also understand that we all have a different experience and it seems like you really make efforts to take that into account and that is great. Not everyone does. I think this is a really good discussion and can be a very healthy one.

And Kraftie, I just had the chance to read your post before this one posted. I agree also that people can do amazing things and have done amazing things as Autistics. And it is very common that disabled people with all kinds of disabilities have the most amazing accomplishments and do very important things. I don't think at all that it has to be one or the other. Whether or not you are disabled is not the deciding factor of what you might be able to accomplish. Each person has a unique set of challenges and abilities and some are able to do great things and others might not be. I am one of those who looks like I could accomplish awesome things but I have had a great deal of difficulty in my life accomplishing much of anything significant while there are those who "look" a lot more disabled than I am who accomplish things I can't even begin to dream of.

Last edited by skibum on 31 Oct 2015, 12:45 pm, edited 2 times in total.

What is neurotype if you please?

One way to tell apart moderate people from more eggstreme is that eggstremes use terms like ableism, trigger warnings, functioning labels, "tone", etc. I cannot get these words out of my mouth or fingers without feeling yucky. I think there are more moderates, but eggstremes are loud and have some followers.

I guess I must have a very thick skin, because I can't understand the anxiety the OP feels about offending and being ostracized by this virtual community. So someone doesn't like you, big deal. Perhaps you have felt more keenly than I have the pain of not fitting in. I have not fit in for the past half century and am kind of used to it.

The only regrets I have about it are related to lost jobs or lost relationships, but I still am not smart enough to know when to be anxious! I have just learned to suppress and stifle myself in SITUATIONS where I'm likely to cause a problem by being myself ... as well as to limit my exposure to those situations in the first place.

I have a lot of distress because of sensory and executive functioning issues, and it certainly would help with that distress to be more accepted by my peers, but I accept myself enough to know that not everybody is going to like me, no matter what, and no matter how I behave.

You know, not every forum fits for every person, even if the basic subject matter would seem to match one's interests or experience. Personalities, setup, all kinds of things go into it. Maybe "shop around" (so to speak) for a forum where you feel more comfortable?

FTR, I don't see "embracing" neurodiversity as something that negates one's experiences and/or work on being able to be social and so on; I think of neurodiversity as accepting autistic people as being who we are without forcing us to conform to some exacting sterotype, but all people, NTs included, work at social skills and situations and often need tools on how to deal - hence the many, many "how to behave in situation X," "what to say on a date," "what the right thing is to wear," "how to be a better friend/make friends," "what to give as an appropriate gift" and on and on, articles you'll see in NT magazines.

I don't see accepting differences as meaning nobody ever has to work on anything. And I definitely don't see it as, nobody's experience and work as an autistic person count/counts. (Ugh, grammar!) Again, this might just be a bad fit for the OP (this forum)? It happens. Not negating your feelings, OP, but you should try to be comfortable wherever you are. IMO everyone has that right.

Just my view.

My mind does not accept autism as a disability, but recognizes that autism is expressed in a variety of disabilities.

Autistic traits that don't require support are considered subclinical and a person who has them will not be given an ASD diagnosis, unless there is a misdiagnosis.

Nevertheless, an autistic person may have many traits which are clearly part of the developmental pattern that resulted in the needs that were noted in their autism spectrum diagnosis but for which they do not require support and which are not disabling in isolation.

For this reason, I think it makes sense to acknowledge that autism is a larger organizing framework than the disabilities/needs for support that are a necessary part of it. Those needs are disabilities, but the larger pattern is not. My special interests are recognizably autistic as are my difficulties in making friends and maintaining friendships, but neither of those things is a disability.

My executive function problems are also recognizably part of that pattern and they do have disabling effects. Without help from other people, particularly my wife, I would not be able to lead the life I currently do. My difficulties in social communication have been an issue at work, in my relations with neighbors and in the social structures that my life requires me to interact with (e.g., school, the block association, etc.)

These difficulties are a disability, but they are not the whole of the set of recognizably autistic traits in me, therefore it does not necessarily make sense to me to say "autism is a disability" and at times it makes more sense to say something like "autism is a difference in neurology with very heterogeneous expressions, some autistic traits may be disabling and others may be strengths an individual can build on."

I think autistic people can have problems recognizing the scope of the autistic spectrum, finding it hard to recognize when individuals on the spectrum are quite different than themselves, and some people on the autistic spectrum tend toward polarizing black and white thinking that makes this problem worse.

Adamantium you make a very good point that I had never thought of. It makes a lot of sense.

Got to say, I'm already feeling a bit more at ease from this. It's gone better than I'd probably expected. So thank you all for that.

That seems... strange to me. Something is a disability sometimes, but not others? Do you mean that it doesn't always create problems or have to create problems? That makes sense and I'd agree with that. But I'm really not sure that's what you're saying.



Thank you for sharing, too. There's a lot here and it's hard for me to respond to all of it. It's certainly a lot different from my experience but I'm seeing similarities here too. I can relate to some of this. And yes, I absolutely would describe accepting one's limitations is liberating and empowering. It's so much better than feeling sorry for one's self.

You talk about how if society were different we'd struggle a lot less. I agree, I'm just not seeing compelling answers to how that change would look, how it would be achieved... and I sometimes see people who seem to suggest that it's all on others and not in any way on them. That's one of the big things that irks me. I've worked on this stuff, I think it was the right choice to do so and it's helped me a lot.

I get the "you don't seem autistic" thing now and then. It's a bit annoying sometimes, I can relate to that. It seems like you find it more upsetting than I do. Reading about your story I can definitely see why.



I'm hoping to hear someone else answer that. I'm not sure I can, at this point.



See, this isn't an issue for me in most situations. It's specific to interacting with groups of other autistic people. If someone doesn't like me in most cases, that's their problem. If I don't fit in? Well, I usually try to. Nobody manages to do this everywhere; I don't expect it. I do aim for it, because I do feel a lot better about myself and the world around me when I'm able to. There are groups where I fit in very well. There are some where I didn't at first and then I listened, learned, adapted and ultimately changed that. Others? That doesn't work. Not a big deal normally, it happens.

I don't expect everyone to like me, either.

But sometimes I want to talk to someone who can directly relate to my life with ASD or autism more generally. When I try and end up getting burned by it and treated like a pariah or a traitor, that feels like a betrayal. It's personal. It leaves me feeling isolated, alienated and burdened with thoughts I can't meaningfully share with anyone but desperately want to. It's put me in places where I've wondered if I'll ever find someone I can relate to on this level. It's extremely painful. It's nothing like being rejected or not fitting in with people who are “neurotypical”. That's easy by comparison, and finding such groups is far easier. The stakes are so much lower.

This has happened to me before; where my attempts to find someone I can talk to about this stuff blow up in my face. I came in here with my guard up, ready for it to happen again. Being accepted by others with autism is a goal, but not something I'd have put money on. My past experiences inform my expectations. My past experiences aren't good, to say the least.



I appreciate that input and it's very well spoken, thank you.

I do intend to look around some more, but I haven't seen enough of this place to even know whether that's needed yet. It's what I'm trying to figure out. These things I'm talking about? They haven't happened to me here. I'm trying to see if they're likely to, in which case it would be better for everyone if I simply moved on. If not? Great! Mission accomplished.

It's very possible that as I suggested in my opening post, a lot of these ideas that I take issue with have just been misrepresented to me or misunderstood by me. Or they're the voice of a radical, vocal minority. Or any/all of the above.



I've probably been guilty of that sort of black and white thinking and it's gotten worse with time as regards these issues. Easing out of it is a challenge I'd like to take on. I don't actually have this issue with people who I don't perceive as being fairly close to me on the spectrum. It's when I feel like they are they I start to get this way. When I feel like someone is every bit as capable as me but does not do anything with it or take any responsibility for themselves.

I doubt if I'd ever agree with you on your view on autism as a disability. I can respect that it is your view, though. I'm fine with people respectfully disagreeing; but the "respectfully" part hasn't been something I've seen a lot, which in turn makes it hard for me to extend that same courtesy.

I believe whether something is a disability COULD be dependent on specific context.

If a person, in Paleolithic times could not physically be a hunter, that would have seemed to his peers to be a disability. If, on the other hand, he/she could be skillful in delegate negotiations, or is perceived to possess spiritual abilities, he/she would not be seen as disabled at all--just "different."

Frankly, one had to be really weird to see, at first glance, the efficacy of a cereal grain over cooked meat. A person professing these beliefs would have been considered odd. It took quite a long time for agriculture to take hold. It took a really brave and unusual person to consider the above.

I think a lot of people here can relate to that feeling, and it happens even to long-time members. People here have a variety of different opinions and personalities, and occasionally a person will feel ganged-up on. (I'm not saying it's right, just that it's the reality of any online forum, and not just you!)

The only 'party line' I've noticed is that the mods here definitely try to be welcoming and accepting of folks who are questioning whether they might be on the spectrum, or choose not to get an official diagnosis, for a variety of reasons. But there are other long-time members who are firmly against self-diagnosis, who are free to voice their opinions as well. You don't have to agree with the opinions of the moderators; and as you have seen in this thread, for any opinion you have, you will probably find at least a few others who agree with you, even if you're not in the majority.

Thanks for clarifying why fitting in with a group of aspies is important to you. I understand better now.

I have participated in online communities for 20+ years, and I have found it is very common to have frictions and misunderstandings develop in such communities. For this reason, I am extremely guarded in sharing my real feelings in places like this. People here are still just people, and behave no better or worse (in aggregate) than people in other communities. They aren't automatically kind or respectful just because they may share a diagnosis.

In fact, you could sort of expect more misunderstandings and conflicts in a group of people who share social difficulties and problems with receptive and expressive communication.

I mostly will talk about my autie issues with two close family members and a therapist. But I do take in a lot of ideas and information in a forum like this, so it makes participating worthwhile. I just try to have realistic expectations and if I clash with someone, I just stop interacting with that person.