Could eliminating the autism diagnosis reduce harm/discrimination?

[PastelPetals]

I would like to note (as you did write a lot so I can't quote it all) is i consider the system bullys. I was not diagnosed until middle school but before then I was still bossed around, disrespected, and abused by the school system specifically. I unfortunately don't have the luxury of casting the system aside. If it was just about being weird then sure but I need help learning living skills and job skills. I also need help building independence. Things work for me in a way that I need specialists who have the time to go over things 100 times before I get it. I wish I could just say eff the system. And at times I have wanted too. You mentioned rape. I was assaulted by an autistic boy and while they didn't help me they didn't punish him either. Bullys have never just named called either. I have gotten punched, kicked, pushed, pinched, I had my head beaten, I was groped.

Let me make this clear: YOU DESERVE TO BE RESPECTED. As we all do. But just throwing out the whole system would end up hurting a lot of people who can't afford to lose supports. Without a label I would just be another stupid kid who is gonna end up homeless. Whether we like it or not people like concrete labels for things and this label is how I get enough help to survive. We are not all just autistic enough to be annoying to NT's some of us need more help and not being labeled would hurt overall. It might help you I am not saying it wouldn't but everyone is not you only you are you. And I as myself am saying that I need this diagnosis.

EDIT: for clarity

 

[BrokenBoy]

Dude do you need sum Xanax?

 

[Progster]

The simple answer to the question is no, eliminating the autism diagnosis won't reduce harm and discrimination. One doesn't need a diagnosis to be harmed or discriminated against. If a person is seen to be different, they will be bullied and discriminated against regardless whether they have a medical diagnosis or not.

You had a bad experience and that has understandably affected your perception of it, but you can't speak for everyone. Not everyone has bad experiences after diagnosis and not everyone feels that way. Many have benefitted. Not all, but many. A diagnosis can mean that one has appropiate accommodations at school, college or at work. It can mean that your family can understand you better, or that you have closure for past harm. There are those who regret their diagnosis and have been harmed in some way, but there are also those who are grateful for it, and you cannot dismiss their positive experience just because you had a negative one. If you have been harmed, it is the fault of those who put you in that position, not the diagnosis itself.

Also, writing in capitals just comes across as ranting and aggressive, and will not make your arguments any more, (or any less) valid. It doesn't help. If you feel angry, take a break, go away and do something else until you have calmed down, think through things, come back and then write your thoughts.

 

[Thinx]

I do really see the point you are making, which is very valid in your case, and probably for a number of others for whom special Ed wasn't suitable. You could maybe let go of the insistence on a complete change, and use your high intelligence to see that there's a spectrum here, some of who benefit from the system in place.

Nowadays in the UK there's a useful distinction of ASD 1, 2 and 3, and most of the people who come under the socially weird but adequately coping ASD1 category don't get offered special help, except if gifted. They may get helped with bullying if needed and if they are lucky. I worked a while with people in that category and their families.

You are 31, and this happened around 20 years ago, and went on a long time, and it has traumatised you I think. It does sound like you may be up against Post Traumatic Stress Disorder, as many people can be from the effects of autism in a society that doesn't understand our difficulties or help effectively. The question of what should have happened is already historic, and more relevant now is, how you find strategies, help and support for how you are left feeling, and how to move on with life.

All is not lost, if you can use your intelligence and strengths to focus on building yourself up the way they should have helped you to be. Lots of people, NT or ND, don't get what they need in childhood or are misdiagnosed, made worse, or actively abused by mistaken or uncaring others. It's utterly wrong, but it's also awesome the way many people fight back to cope and feel better through strategies, like self help, online or other support, therapy, etc.

I have done a lot of therapy, and sat on both sides of the room as it were, offering help as well as using it, and it's certainly not an easy ride. I have also got a lot from self help strategies learned along the way, from others, from books, on courses, and online. I am way different to how I once was.

I found I could use my intelligence to get myself what I needed, and I would recommend you persevere with that, as you have already started to do. Glad you're here. Go easy on the capitals, we may run out.

 

[Moonhart44]

No. when i foind out i was on the spectrum, i was describing all my traits, but everyone acted like that nothing was new. for me being autistic was new but for others, the sense was there. i have struggled as a result without ever having a name to categorize why.

 

[Aspychata]

l know a state in the US that this would happen in. A lot of the people were bullies to anyone, all you needed was to be female or a non-white person and you pretty much had zero rights. This why l removed my child from the school system. And l couldn't wait to leave the state. The things l read of horribly wrong things happening to innocent people was pretty bad with no check and balance. This state ended up being in the news for this very thing.

 

[Tom]

I grew up and was well into adulthood before the general populace (and I suppose most professionals) were aware that ASD1 even existed. So I was catagorized 'different' by the polite and 'weird' by the rude. And from what I have observed since I think I prefered those labels to the Autistic one. It was more of an unknown quality and wider in perception perhaps. The minimum knowledge of most people on autism and the shift to seeing it as a medical condition/disorder (rather then just variance in personality) seems to have given many people a narrower, and stereotyped view.

Though it is not because I am ashamed to be on the spectrum. I am glad about my differences and being on the spectrum had a lot to do with it so I am glad it happened to me.

I don't think it helps that these days people seem even more obsessed with identities then usual. Many are seeing themselves and others as a ever growing list of classifications.

One of the conundrums of improving that however comes that having special considerations/schools/work accomodations/and all the various supports also requires some sort of formal professional/medical diagnosis.

P.S. The feeling of having built up frustrations, etc is not alien to most of us, but it is best to try and channel it into threads designed for it and where people know what to expect. (ie. I think there is a Ranting thread somewhere).

 

[SDRSpark]

I grew up and was well into adulthood before the general populace (and I suppose most professionals) were aware that ASD1 even existed. So I was catagorized 'different' by the polite and 'weird' by the rude. And from what I have observed since I think I prefered those labels to the Autistic one. It was more of an unknown quality and wider in perception perhaps. The minimum knowledge of most people on autism and the shift to seeing it as a medical condition/disorder (rather then just variance in personality) seems to have given many people a narrower, and stereotyped view.

Though it is not because I am ashamed to be on the spectrum. I am glad about my differences and being on the spectrum had a lot to do with it so I am glad it happened to me.

I don't think it helps that these days people seem even more obsessed with identities then usual. Many are seeing themselves and others as a ever growing list of classifications.

One of the conundrums of improving that however comes that having special considerations/schools/work accomodations/and all the various supports also requires some sort of formal professional/medical diagnosis.

P.S. The feeling of having built up frustrations, etc is not alien to most of us, but it is best to try and channel it into threads designed for it and where people know what to expect. (ie. I think there is a Ranting thread somewhere).

I am in the same boat...the issue for me (and why I'm not content to just "be different" as many well meaning people insist that I should) is that "different" didn't actually help me understand or manage any of the issues that I struggled with daily for years. (And neither did "gifted", which was my official classification.) There's nothing wrong with being autistic. The A word doesn't scare me and I'm not the least bit ashamed of it (something I suspect a lot of people don't understand; I swear I say "I think I'm autistic" and they hear "I think there's something horribly wrong with me"). It's a way to understand what the heck is going on with me and find others like me (and learn skills to manage things such as sensory sensitivities).

 

[Tom]

I am in the same boat...the issue for me (and why I'm not content to just "be different" as many well meaning people insist that I should) is that "different" didn't actually help me understand or manage any of the issues that I struggled with daily for years. (And neither did "gifted", which was my official classification.) There's nothing wrong with being autistic. The A word doesn't scare me and I'm not the least bit ashamed of it (something I suspect a lot of people don't understand; I swear I say "I think I'm autistic" and they hear "I think there's something horribly wrong with me"). It's a way to understand what the heck is going on with me and find others like me (and learn skills to manage things such as sensory sensitivities).

Yes, absolutely. While the 'different' was preferable* to 'autistic' as far as other people's perspective of me went, learning I was autistic was the beginning of a whole new era of self learning and understanding. A whole lot that was previously a mystery makes much more sense now. And it has enabled me to get much better control of myself and avoid pitfalls I tended to fall into previously as well as better interface with those close to me. Though in the interface it is also a matter of the others also learning and accepting the basic characteristics of autism.

* Actually in my case essential. I had a full military career and a diagnosis would have very likely ended it.

 

[tree]

@Past Despiration

P.S. The feeling of having built up frustrations, etc is not alien to most of us, but it is best to try and channel it into threads designed for it and where people know what to expect. ( I think there is a Ranting thread somewhere).

https://www.autismforums.com/threads/the-ranting-room.7289/#post-116658

 

[SDRSpark]

Yes, absolutely. While the 'different' was preferable* to 'autistic' as far as other people's perspective of me went, learning I was autistic was the beginning of a whole new era of self learning and understanding. A whole lot that was previously a mystery makes much more sense now. And it has enabled me to get much better control of myself and avoid pitfalls I tended to fall into previously as well as better interface with those close to me. Though in the interface it is also a matter of the others also learning and accepting the basic characteristics of autism.

* Actually in my case essential. I had a full military career and a diagnosis would have very likely ended it.

This is exactly it! And I wish I'd known so much sooner, because I could have avoided so many of those pitfalls (and so much resulting trauma) and quite possibly, had a much better life up to this point if I'd known. That's what really grinds my gears - so much probably would never have happened if I'd known.

For me, career concerns probably never would have been a thing. They may have been, except the mental health issues (that were in large part due to undiagnosed autism, I'm sure) closed off quite a few career pathways anyway. So autism most likely ruined those things for me without the diagnosis...the way I see it, I might as well have had the diagnosis, then I would have known what was going on and could have had a better life.

 

[Au Naturel]

"Right now we have two groups we divide people up into: Autistic and non-autistic or neurotypical."

That's the first mistake. There is no sharp line. If you are on a spectrum, everything blends seamlessly. You have noticed that kind of group division only breeds polarization. Doesn't matter what irrelevant divisions you're looking at. If our common humanity doesn't come first, humanity is screwed.

There are potentially useful aspects to an autism diagnosis. One is that it explains so much. I wasn't that person because of bad personal choices or frigid parents or because of some terrible trauma. That's just how I am built and the flying fickle finger of fate just randomly poked me the wrong way. Once that happens you can stop chasing after solutions or wondering what's "wrong" with you because autism cannot be "solved". There's no fix, only ways to try to adjust to life.

Also, a diagnosis is valuable in its predictive ability. If you can predict what will happen in a given situation it enables you to look ahead and try to plan the situation in such a way that the bad thing that might happen will not. A diagnosis will have predictive value in considering having children and should one be autistic, you'll be ready for it and immediately work to enhance their quality of life, far better than what you had to deal with.

Lastly, a diagnosis may qualify you for government assistance of some sort. Maybe ASD level 1 may not see a lot of this but level 2 and 3 certainly will.

Regardless, I wouldn't share that diagnosis with anyone unless it were simply impossible to lead a tolerable life otherwise. Even then I'd keep it strictly on a need to know basis. People without a clue will use that as a way to control you. Putting that on as a public label can only lead to even more bullying and discrimination.

 

[Rectify]

See, here's the thing: Don't neurotypical people sometimes have all kinds of problems too? Don't some of them get problems that are sometimes similar to autistics?

Absolutely, yes. Great point, though I still don't think that doing away with the autism label would/will be helpful in practice.

Actually, the autism diagnosis can result in discrimation. I was declined on a long term care insurance policy application because of the diagnosis. The insurance agent could not find a single insurance carrier willing to provide long term care insurance because of the diagnosis. I was told by the agent that I could have been insured prior to the diagnosis.

Therefore this is a valid question that has been raised.

I'm really sorry to hear that. It's outrageous, really.

This is the sort of thing that we can focus on, to improve.

What you are asking is for people to stop looking past labels and view each person individually, get to know that person and deal with their strengths and weaknesses individually, giving help where it's genuinely needed.

It is a great goal and I think we can, and are, all gradually working towards it though you're right (@Nervous Rex ) it won't completely happen. There will always be issues between people. Some things we can improve but we also have to work on ourselves, in my opinion, to strengthen ourselves so that we don't become those people who wince at the slightest hint of someone not understanding our situation or possibly saying something against us.

 

[GrownupGirl]

NOT JUST NOT NAMING THE ISSUE> READ

NOT GIVING THE COPS AND THE SCHOOLS POWER TO HURT YOU! JUST NOT GIVING THEM POWER TO HURT YOU! SIMPLE AS THAT!


BULLIES ARE NOT AS BAD AS BULLIES IN THE SCHOOL SYSTEM!


YOU THINK BULLIES ARE BAD? HOW ABOUT TRY BULLIES NOT EVEN DARKNESS OR TIME CAN ESCAPE! WHY WOULD YOU WANT THAT? DO YOU THINK THE BULLIES GO AWAY WHEN THE SCHOOL STARTS MAKING YOU CRY AND WON'T EVEN LET YOU GO TO THE BATHROOM TO LET THE TEARS OUT?


DO YOU GET IT? BULLIES NAME CALL. THAT'S JUST SOUND. THAT'S JUST WORD. I KNOW HOW BAD IT IS TO HAVE THE AUTISTIC SCHOOL SERVICE PEOPLE THREATEN YOU IF YOU RUN AWAY, BECAUSE THE WOODS LOOKS LIKE THE ONE PLACE YOU CAN GET AWAY FROM THEM! THEY DO NOT JUST INSULT YOU!

DON'T YOU GET IT? INSULTING WORDS SUCK, BUT THEY'RE NOT THE WORST THEY CAN DO TO YOU! IF YOU THINK IT IS THE WORST YOU NEED TO BE IN AN AUTISTIC PROGRAM AT A SCHOOL THEY WILL HURT YOU EVERY WYA POSSIBLE

YES. THAT INCLUDES SEXUAL ASSAULT. THIS IS WHAT HAPPENS WHEN YOU GET LABELED AUTISTIC BECAUSE THE WORD LETS THE LAW DISMISS YOU. NO JUDGE. NO ABILITY TO DEFEND.

Autistics get raped a lot to begin with, but my friend was raped, and bcause they identified as autistic they would not help her.

THIS IS WHAT AUTISM IN SCHOOL GETS YOU! THEY TREAT YOU TEN TIMES WORSE BECAUSE NOW THE LAW IS ON THEIR SIDE. You get declared autistic, you just can't call for help. They touch you all the tim. I know because it's not hypothetical.

Why you all messing with this?

DECLARED AUTISTIC AND YOU CAN'T EVEN TAKE IT TO COURT!


IT'S NOT GOOD

WEIRD IS BETTER THAN BEING TORTURED WITH THIS! BE WEIRD! EMBRACE WEIRDITY! WHAT YOU SUGGEST IS CHILDREN BEING BERATED AND HURT EVERY SINGE DAY! LET THEM HAVE SOME WEIRDNES! IT'S BETTER THAN HRUTING THEM ALL THE TIME!

What is with the all caps? If you think screaming at us is going to make us listen it won't. I know it never has for me.

I wasn't diagnosed with Asperger's until my late 20's. I think doing so probably saved my life. I was just absolutely falling apart. When I finally got diagnosed it finally made sense. I think people should get diagnosed. If I had been when I still a kid things might have been better.