"Autism is a difference not a disability"

[MJCadman]

Do you agree!

I personally don't. I hate it.

I think it minimises how hard life is.

Also dislike "Autism is my Superpower, what's yours"?

I don't want to normalise autism. I want people to understand it and make allowances.

I know this isn't what everyone else wants. This is the Neurodiverse MN board. I'm not talking about having kids with it. My daughter has it and of course I want her to be seen like the rest of her friends. I just mean for me personally I do want people to know I think differently. I can't have it both ways. One way for me and one for my child.

They all have cancer but they have stages which are named to give a clearer understanding. I personally like the idea of the levels they have in the USA with asd as it gives a clearer picture but I know lots don’t like that.

There are lots of diagnoses that cover a broad range of things. But, to be fair, we do also use lots of additional descriptors around cancer and other diagnoses. In cancer, we stage it and label where it impacts. Whereas some (not all) people who are more on the autism is a difference wave lenghth don't want any descriptors attached to autism either, which can make it difficult to judge if a service is needed, or for you etc.

Yes, me. I still have struggles but the good outweighs the bad. Ive set up my life so the struggles arent so life-limiting. Im 50 and over past few years have been learning to unmask, and just be me. My anxiety and depression has reduced due to this. My job and studies (Im always studying) requires a lot of hyperfocus which I love. I am also hyper empathetic which, again, is required for my job and makes me better at it I think. When it all gets too much I have tools to reduce meltdowns.

For me the world is not set up for me, so Ive made adjustments to set it up for myself. For the most part, that works for me.

I do understand this wouldnt be the case for everybodys autism.

just received my diagnosis today and i'm in my mid 40s. i definitely consider it a disability to me. its held me back a lot in the workplace and i've had so many breakdowns that i've tried to hide or minimise but haven't been able to learn from, adapt/ modify my behaviour and become flexible.

i like that there is more awareness and empathy towards the condition. hopefully less stigma and less lazy stereotyping.

I was diagnosed as "autistic without learning disabilities". It's pretty clear to me that someone who is "autistic with learning disabilities" is going to have a much higher support requirement because of the comorbid learning disabilities.

@MaidOfAle I get your point but some people once the mole is removed or the lump in the breast don't have cancer. Autism is part of who you are not a disease.

I think the argument is fundamentally the same as men versus women.

Are women disabled because we aren't as fast or strong and we bleed every month ? Well probably yes in man's world. But equally it's probably is way harder to be woman. Periods actually hurt, they limit us, wombs go wrong , pregnancy can kill us, menopause really fucks the body in a way male aging doesn't. But we aren't considered disabled because we are not a sub class of men. We are women and we do great stuff and in many fields no different to men.

The separate schools, the allowances, the seeing it from the other side are all arguments that have been tossed out before. Like the fight against patriarchy you can't "win" until the game is in your favour.

Some women get period cramps so badly that they faint, collapse onto the floor. I would say that those women were disabled.

I'm going to attach an image I saved recently. It shows how the dx has changed through the dsm's.

I also want to add that not rvery person with severe autism has ld dx or not, some are just that impacted by their autism that they can't do even the simplest things.

What I'm also finding is that people who advocate for those with severe/profound autism are now having to use a classified or define their loved ones dx in a completely different way such as pp said above "neurological disability" because of what is being termed the diagnosis creep. For those who got their dx before the dsm change their dx is autism and at that time what that meant was something completely different but that is still their dx not ld.

I think it's really frustrating that there are some who are able to communicate with autism (please note I wrote some) who want to advocate for everyone with that dx even though they have no idea what it is like to have severe/ profound autism.

For my son autism is a disability that he'll be aflicted with his whole life, we don't see it as part of his personality we sit it as something that is stopping him from living his full life, something which does need fighting like any other disability and yes if there was a cure I'd give it to him or if I could I'd take his autism from him.

@Perzival that is a fascinating summary. My ds has a diagnosis of atypical autism even though he was diagnosed in 2010

@Perzival - "I think it's really frustrating that there are some who are able to communicate with autism (please note I wrote some) who want to advocate for everyone with that dx even though they have no idea what it is like to have severe/ profound autism."

The thing is, those folk you're talking about still do have an experience of the world that's closer, in relative terms, to the ones with a much more disabling incidence of autism than the neurotypical experience; to write off everything they say on the basis that they can communicate is a fallacy when they may actually have some parts of the inside-out experience that are similar or even the same. That still has value, because the outside-in perception of those who cannot communicate effectively by neurotypical folk is - by definition - fraught with almost 100% assumptions and missing information, certainly more so than the people you're talking about.

Should they act as though they have all the answers? Absolutely not, and those who do are flat-out wrong. But that doesn't mean that there's nothing of value there.

I don't write off everything they say, that's why I made a point of saying some because some people with autism do try to speak for everyone with autism.

I don't agree that they have a closer experience because their experience of the world is so far removed from say what my son's is. To assume that they understand his life experience or that of someone like him more than a neurological person who has cared and advocated for him for decades is misguided at best but I also see that because people with autism may have issues with theory of mind and definitely have communication issues as that is required for dx, I try to be gentle around the subject than what some other parent/ carers maybe.

Anyone who can communicate or argue on a website is at a totally different ball game to that of my son. The autism dx is in my opinion useless now as it has no proper meaning. This is a sentiment echoed by those in my position and usually fought against by those who aren't as severely impacted.

That's just it, though - they may not understand his life experience more than his carer, but they will likely (but not always) understand some parts of it more because they have them in common; suggesting otherwise is to simply be ignorant of the underlying neurological condition.

This is a uniquely nuanced subject, and absolutism on both sides of this particular simply renders those arguments meaningless.

As for the autism diagnosis being useless and having no proper meaning...it has a huge amount of meaning for many, many people. The fact that it doesn't have a special meaning to your specific circumstance, and that of other people in your position, is largely irrelevant.

"As for the autism diagnosis being useless and having no proper meaning...it has a huge amount of meaning for many, many people. The fact that it doesn't have a special meaning to your specific circumstance, and that of other people in your position, is largely irrelevant."

This proves my point, you're saying that those most severely impacted are largely irrelevant. You're talking about the people who the dx was first made for before the inclusion of other presentations.

Saying those who cannot advocate for themselves and their families views who advocate for on behalf of them have views which are irrelevant because you're view is different is the issue. This is the heart of the debate.

"That's just it, though - they may not understand his life experience more than his carer, but they will likely (but not always) understand some parts of it more because they have them in common; suggesting otherwise is to simply be ignorant of the underlying neurological condition."

I fail to see what a self diagnosed or someone who is communication, articulate, doesn't require 24 hour care because of their needs etc has in common with someone who does. Anyone who argues autism is a difference rather than disability clearly doesn't understand the life of those severly impacted. People with a genuine dx who are able to communicate etc (higher functioning) could possibly struggle with theory of mind as part of the dx and would definitely have communication issues otherwise they wouldn't have a dx so no, these people are extremely unlikely to have a better understanding of someone like ds or even aspects of his life as their is no shared experience.

Now you're just twisting my words. I didn't say those people are irrelevant at all - making things up doesn't help your credibility. I'm also not arguing that it's a difference rather than a disability (see my earlier comments in the thread).

Let's ignore the "self-diagnosed" part in there, that's nothing to do with what I'm saying.

You also seem to be conflating "unable to communicate" with "difficulty communicating"; there's a whole world of range in there.

But...ultimately, it comes down to this:

"I fail to see what...someone who is communication, articulate, doesn't require 24 hour care because of their needs etc has in common with someone who does"

That's the point. You can't see it, you can't understand it, and - more relevant - you don't seem to want to see it, because even when presented with information which would aid such an endeavour, you refuse to acknowledge it.

Ironically, the image that you posted earlier purporting to show the diagnostic creep actually shows the opposite (as shown if you read the actual definitions outside of that image) - the definition in the DSM 3 was very much more vague than it is in the latest version. It also never required a complete lack of communication, and the only true difference is that it didn't take into account masking. In fact, when it comes to communication, the DSM 3 specifically says this:

"the numbered items are arranged so that those first listed are more likely to apply to younger or more disabled, and the later ones, to older or less disabled"

The result is that almost everybody diagnosed today under the DSM 5 definition would've also been covered under the DSM 3 definition, had anybody bothered to properly examine it; the lower diagnosis rates from the time of the DSM 3 were a function of a) bias in the medical community whereby only the most obvious cases were ever diagnosed, and b) the effect of masking was largely unknown at the time. The fact that the DSM 5 contains far more specificity is simply a consequence of the fact that it exists to aid diagnosis.

Just for clarity I'll quote exactly what you wrote so you can see what you put. I haven't twisted your words, they're pretty clear:-

"As for the autism diagnosis being useless and having no proper meaning...it has a huge amount of meaning for many, many people. The fact that it doesn't have a special meaning to your specific circumstance, and that of other people in your position, is largely irrelevant."

"That's the point. You can't see it, you can't understand it, and - more relevant - you don't seem to want to see it, because even when presented with information which would aid such an endeavour, you refuse to acknowledge it"

Self reflection is a great thing. How can anyone who is dx'd, articulate, able to discuss/debate, possibly have a family, home, career etc (this isn't a description of you, it's a generalisation) understand what it is like to not have any of that? Throw in the that due to the dx the hf person would have communication issues by virtue of their dx (it's a requirement) and possibly theory of mind issues (common with hf dx) be able to say that they have commonality with someone who cannot communicate at that level. The severly impacted person unable to describe their own situation, feelings, thoughts or experience. It seems very arrogant to assume you can understand their world or even some of it when you've never met them. (Hf/lf used due to lack of descriptors and not meant to offend).

Your discussion of dsm3/5 completely misses dsm 4. The inclusion of aspergers and the other conditions was because their dx wasn't thoroughly described and dx'd in dsm 3. The move from dsm 4 to 5 was in large part due to lobbying by people with hf/as who weren't having their needs met in the states (insurance system) and wanted their needs recognised and supported. Also Aspergers and the associations.

The fact that people with severe autism aren't now having their needs met or included in debate and research has been widely acknowledge. Google the Lancet report/ profound autism.

I don't like it either.
I am currently going through a diagnosis at the age of 32. My son is autistic and my daughters are now being assessed also. Not sure if my opinion will be validated as I'm not officially diagnosed. But I hate the word "difference" and "different" because my mum always used those terms and said everybody is different when she refused to get me assessed after people said to her when I was 3 years old and 9 years old that they think I should be assessed for Autism. So for me the term "difference" undermimes just how difficult things are to what you would define a "normal" person to have.

In support of my diagnosis at the moment, i have also done a petition in regards to diagnostians in Autism and I hope I can get away with being cheeky and put it here just so anyone can take a read, and if you support it to sign and share it 🙏🏼🙏🏼

@dairyfairy21 I love how you have written it-it’s me!
the only thing I would add is that the acting and adapting wears me out (after a day of doing it in a job, I struggle to do anything else, which doesn’t make me disabled but less able at the end of the day).

If https://www.gov.uk/government/publications/equality-act-guidance/disability-equality-act-2010-guidance-on-matters-to-be-taken-into-account-in-determining-questions-relating-to-the-definition-of-disability-html applies to you then you are disabled, whether you like that term or not.

D3. In general, day-to-day activities are things people do on a regular or daily basis, and examples include shopping, reading and writing, having a conversation or using the telephone, watching television, getting washed and dressed, preparing and eating food, carrying out household tasks, walking and travelling by various forms of transport, and taking part in social activities.

If you've burned out by the end of your workday such that you can't do basic housework and cooking, or you can't face socialising at the weekend after a week at work, then you are disabled.

Only ds has asd in our house but everyone of us feels completely worn out after a day at work in a very similar way to ds.

I would add this to my previous posts on here. Dr Luke Beardon has a good “take” on autism, for me at least. I was diagnosed in my early 50’s. Up to then, I was able to accommodate and function in my personal and work life. Beardon says “Autism plus environment = OUTCOME”. In the past few years things have changed hugely in terms of ENVIRONMENT; this has impacted my functional status. I would never have considered I had a disability. Not until I lost certain abilities due to my environment and life changing dramatically.

I think that’s worth mentioning. For those who manage and mask and “get by” there may come a point in future when you are not ABLE to

You've used the word 'bad', 'life-limiting', 'unmask', 'anxiety, 'depression' and 'meltdowns' just in the first paragraph of your post . That is not a life that is not negatively affected. That is a life that you have gone to huge lengths to make work in an ok way for you. I applaud your tenacity but i don't think you should downplay the work you've clearly had to put in and the challenges you've gone though to get to this point.

@Perzival
i do try to be careful to say that my version of autism is not the same as everyone else’s, but it is extremely important to advocate against discrimination for people who are capable of integration. the world wants to dismiss all of us.

The truth is that my dd and I have aspergers, not autism. The fact that they took away the distinction and lumped us all into one category has done a huge disservice to everyone on the spectrum. It’s harder to advocate for both groups now.

Aspergers is fantastic. It’s like having a supercharged computer for a brain. We still face issues and challenges because the world isn’t really built for us, but we can learn to adapt and manage. The trade offs tend to be worthwhile.

What is worse are people saying we aren’t capable of holding down jobs, Doing well in school, or having healthy relationships. We We can do all of those things, especially if given good support while growing up.

Isn’t being negatively affected part of the diagnosis criteria for autism? It certainly was in mine. I have a good job, a husband, DCs and friends so outwardly I guess you’d think I manage fine but there’s lots I do struggle with day to day and always have. I quite like the disabled label as it allows me to give myself a bit of leeway when I’m having a bad day or can’t do something. Before diagnosis Id get really frustrated and angry at myself but now I’m learning that there’s a reason I find some things harder or impossible at times.

I do understand and I think you need to advocate for yourself and people in thesame situation as you. I on tje other hand have to advocate for my son and people and families like him.

I'm a big supporter of splitting the diagnosis. I whole heartedly agree with the use of profound autism as is being brought in and I'm hopeful it'll be defined in the new dsm. I also believe it would be useful for people like you so that you can be treated appropriately and have your dx understood.

The inclusion of Aspergers/ high functioning/ self dx does impact those who see autism as a disability and especially those who are completely debilitated by it. Research has been impacted, understanding, services even the way families are allowed to speak and the language we use.

@Ponderingwindow i honestly wish you well however i will always want a cure, want research to stop others having to go through what we have and advocate for my son to be treated for his disability.

I also thought that to have a dx your autism has to disable you.

❌❌❌ “I also thought that to have a dx your autism has to disable you”❌❌❌

Really? People with asd and other forms of neurodivergence function well UNTIL an inability to cope sets in. Especially for women, I think. I’m tired of people telling me “But you’re SO together”. Doesn’t mean I don’t have asd nor have to work very very hard to fly under the radar and appear acceptably “normal”. My diagnosis is Aspergers. I’m so called “high functioning” and yet the effort it takes to be that, takes a massive toll on me every single day.