Two questions

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I am glad to know that you are not angry. Thank you for clarifying. I can try to understand your point of view. Perhaps I just have not really noticed it like you have. I guess it's good to talk about it. If it can help make this site better and even more inviting than it is already that will be a good thing.

Here's another quote from Carly, grown up:


And here's a quote from Carly's dad, from your page where she's much younger:


Just saying.

...and I think it would be an ethical issue if there is a cure developed that children might make an impulsive decision to take it or a parent might make the decision for them and that people who can't communicate their needs well or who can be easily influenced might agree to something that isn't the best for them. Still, I don't think science should be stopped because there are ethical issues with the potential results of research so I'm not against researching a cure and I do think the pro-cure side of the debate is under-represented here which is all I was saying.

*Carly is young but her view is interesting. The vast majority of the autism self-advocates seem to be anti-cure but these are people who have been very successful and have made having an ASD part of their success, their career, their identity and a big part of their life. Their lives are in some ways very different from others with ASD because of that alone. It's interesting to hear a different view from a self-advocate.

Last edited by daydreamer84 on 01 May 2014, 9:41 pm, edited 1 time in total.

It seems like self-diagnosis is widely accepted on WP, and criticism of self-diagnosis is unpopular on WP.

The thing that I don't understand about self-diagnosis is why self-diagnosed people don't just say that they have autistic traits or are in the broad autism phenotype, which would mean that they can talk about the autistic traits that they have without saying that they have a disorder that I think should be diagnosed by professional (and eventually based on objective instead of subjective measures).

Please understand that it is expensive to obtain a diagnosis in many places. If one doesn't have a job, $500 is a lot of money.

Try more like up to $2,000.00 in many cases. And once you get stuck with that bill for the diagnosis, you still are at risk of not getting any help or services at all. But many self diagnosed people are able to research the DSM's criteria and are able to know themselves well and get opinions from their loved ones and do the deep intense kind of research it takes to figure it out. If you have sensory issues and you always have you would know that. If you have social reciprocity issues and you always have you would know that as well. You would also know the details of your repetitive behaviors.

Yes, if you have the luxury of being in a country that will diagnose you for free or if you have the money to get one than that is the best way to go, of course. There is no debating that. But if you absolutely can't afford it at all because the system you live in can't accommodate you than you have to do what you can. And it is very likely that by the time people are adults they know themselves well enough to be able to look at the DSM and see how well they match the criteria. And many people who self diagnose don't do it alone. They get opinions from the people who know them best and even from whatever professional sources they can get access to. So perhaps you can't say 100% unless you are officially diagnosed but I think you can get pretty close.

Do we challenge everyone who says they have the flu asking them if they have been officially diagnosed? Do we tell them why don't you just say you have flu like symptoms instead? I understand that a trivial thing like the flu, and I know the flu is not trivial but compared to being Autistic it can be called trivial, is very different from claiming you are on the Spectrum but if you have researched the DSM criteria and if it fits you like a glove and your life is impaired because of it, than chances are you are most likely right. It's not rocket science.

And even people who are officially diagnosed get misdiagnosed very often. So why don't they just say that they have Autistic traits as well? I believe that most people self diagnose not because that is their choice but because they don't have any other choice. And if they do it is not done lightly. And I think that Tony Atwood's statement about 90% of people who do get it right is because of the amount of time and research people put into it when they are trying to self diagnose. I don't think people just want to be Autistic because it's cool. I think that anyone who comes to that conclusion about himself has done so after a lot of in depth study accompanied by a lot of emotional turmoil. But I don't know. I might just be speaking for myself but that is what I would imagine.

Last edited by skibum on 01 May 2014, 10:17 pm, edited 2 times in total.

I covered that issue in my payment bias thread. I think wrong diagnosis is also made on the clinician's part too. So I'm not saying people who self-diagnose are always wrong, and clinicians are always right. It's probably a mix. But I feel there has to be a bias in those who pursue a diagnosis.

And I guess off-topic: I wonder if clinicians are assuming a higher co-morbidity rate than there really is, because people who are more familiar to psychiatry are more likely to pursue a diagnosis. Or that psychiatric symptoms can give pseudo-symptoms of another condition, or give that impression.

The more I think about all the different kinds of biases that can exist, the more my mind races, and I guess I need an outlet to post my thoughts.

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The money problem is true, but it doesn't make sense in the context of what I am wondering, which is why people say that they have ASD if they can instead say that they have autistic traits or are BAP, like some of the parents of autistic children say, that they have some of the same traits as their children.

There are a lot of really good questions here to be looked into. I never saw your payment bias thread so I am curious about how it turned out. Perhaps you can put a link to it here.

I think one reason could be that people don't know about all these other sub conditions. Unless you are familiar with all the terminology and all the intricate details of each one you might not know what they are. And people can and do research these things but not everyone can figure out all the little details that separate each group. I think it is easier to just say you are on the Spectrum if you fit the criteria of the DSM rather than trying to figure out if you fit into an intricate subgroup. Like with the flu analogy, and it may be a lame analogy but I'll use it since it's on my mind. It's easier to say "I have the flu" than to figure out which exact strain you have. To have to look up every strain and figure out if you have Asian, bird, swine, equine, amphibian, or antiquated tree frog flu or whatever, you are better off just saying, "I have the flu,"

The BAP is a much bigger group than ASD, not an intricate subgroup of autism.

It's just people who have autistic traits, so it's not necessary to know the term to say that one has autistic traits.

Thank you. I did not realize that. I had actually looked at the definition of BAP and not understood it. I am glad you said this because I will look at it again. I had also looked at things like PDD-NOS and not exactly understood it either. But this is good because it will help me go back and look again and try to learn more. I really do appreciate you pointing this out to me. Thanks.

I was wondering the same thing because my mum realized when my evaluation was being done and she was reading and learning about autism, that she has a lot of autistic traits. She and I talk about her traits and ways that she can relate to me but she doesn't think she's autistic. I've asked her and she says quite definitively, no, she doesn't think so. She doesn't have a severe impairment in social interaction, she can read non-verbal cues and doesn't have awkward , odd or flat non-verbal communication and she has good TOM. She is very socially awkward and anxious has really extreme sensory issues and is rigid about some things. She got the identity and finally understanding both herself and me from learning that I'm autistic and she has autistic traits so I don't see why some people need to have a full fledged disorder as an explanation, an answer, an identity etc.

*I know some people want the diagnosis because they need support, benefits etc. but a lot of people who've posted "do you think I have it" threads have said they just need an answer, explanation etc.

Now this raises another question in line with what Daydreamer is saying. If you have Autistic traits according to the DSM criteria and your life is very impaired and impaired on a daily basis to the point where it is difficult for you to function normally but you simply cannot afford to get an official diagnosis could it actually be harmful for you to just say you have BAP? Because would that not imply that you just have some traits but you are still able to function quite well? So should people who are really very affected every day by all of the traits listed in the DSM only be able to say they have BAP just because they can't fork out up to $2,000.00? If they have any hope of anyone helping them at all will they have any chance to get help they might desperately need if they are only able to say BAP?

Self-diagnosis doesn't get people accommodations or services to help with impairments, so someone saying that they have self-diagnosed ASD doesn't help with those.

Not state or government help no, but I have gotten help from private organizations that I met at the Autism Expo when I told them that I was unofficially diagnosed. I am not self but unofficial. I don't know that they make much distinction between the two. But even though I can't get help with housing or money or government type disability support groups, I was welcomed into private support groups which do activities and sports and things like that. And I understand that this is not what people consider help and benefits but it is making a huge difference in my life. And that is very helpful to me. It might not pay my mortgage and put food on my table but the fact that I have been welcomed by these people and that they are willing to give me whatever "help," support and encouragement they are able to give, even if it's just the emotional boost of being accepted and welcomed because of my Autism, that makes a very big difference in my life.