My new theory on self diagnosed autistics

Post Reply New Topic

This is a really good point. We went through this too...not refusing to get our son DXd (at all - we started assessments at the Regional Center when he was 21 months old), but we clung right down to the last crumb to "other" possibilities simply because the DX of autism sounded so terrifying and we worried for his future. Parents spend a pregnancy wondering whose eyes the child will have, whether he'll be verbal like Mom, musical like Dad, cute fun play dates and Hallmark Christmases. No parent I have ever met in my life patted Mom's tummy and said, "And darling...I hope our child will have a permanent condition which will cause meltdowns everywhere we go, make the child feel pain from noises and sounds, and amount to hours per week of expensive and difficult therapies, years of special ed while all our friends are posting on Facebook about their "amazingly bright!" child's latest achievement, possibly include co-morbidities such as anxiety, depression and learning disabilities which may lower his/her self esteem despite out best efforts to make her love herself and see her worth, and will have our child in special ed in the little room waaaaaaaaaaaaaay at the back of the school out of sight of the 'normal kids'....(happy sigh)".

When my son was initially DXd PDD-NOS we clung to that like a life raft: "Oh, that means that with help, he'll catch up." Most parents I know went through similar psychological self-torture. No parent "pushes" to have one's child DXd with a permanent disability (or what is considered a disability, especially when you're new to it all and don't have much information yet). No parent wants to have to face that his/her child, for whom the parents had such big hopes and dreams, has a brain which will never function in a way that will make it "easy" for him/her in society. Actually, for many parents, initially, it's devastating, literally devastating. So devastating, in fact, that depression and other issues among the parents are common and divorce rates among parents of special needs people are higher than the general population.

And as stated, even if facing actual issues, parents don't want "the label" which will follow the child through his/her entire school career at the very least, will "keep" the child in special ed even as the parent is hoping and pushing for more inclusion and so on.

Parents fight, argue, bicker over who "caused" the autism, "blame" themselves (sometimes rightly - in my case, certainly; I am OTS but did not realize it, or I knew something was very very significantly different but didn't realize the cause), spend nights crying because their child is being bullied for being "different" and feel that being in special ed only compounds that and pray nightly for some sort of miracle to occur so the child doesn't have to go through that torture from the standard ed kids any more, desperately point out to each other all the way their child seems "so normal," scour the internet for "miracle stories," become curebies in their quest for their child not to be autistic. (Not all parents by any means, just want to clarify that....but many...there are entire forums dedicated to "curing" a child's autism...as I think we all know.)

So, "pushing for" confirmation of that? I am really not buying that. At all.

My story, too. On the advice of a psychiatrist who was anti-label, we resisted pressure from the school to get an assessment. Once I began to accept what they were saying, and we allowed them to coerce us into the assessment that led to our son's ASD diagnosis, it was impossible to consider why and what it meant without recognizing the same symptoms in myself.

When I first came here I was wanting to know how common misdiagnoses are because we wanted to believe this was one.

We were dragged into it and didn't want to know. I think this kind of denial is not at all unusual.

Well it doesn't really matter too much to me IRL if the OP comes to agree or not, but I figure it's still a thread on self diagnoses so might as well share my experience that's contrary to what the OP suggests goes on in the minds of the self diagnosed.

I know what my experience was and so I know how it is to grow up knowing something you can't quite figure out makes you different from everyone else not just in the sense of having different interests or your own personality. I used to wonder if I was dropped off by aliens, once when my mom wasn't home I was frantically searching in her room for any papers or documentation that I had maybe been adopted or thinking there would be records of something wrong with me that was being kept from me. I would construct all kinds of strange theories for why I felt different...as for how people treated me I mostly just wished they'd leave me alone or interact civily not give me extra attention for being unusual.

So yeah finally when I was 21 my sister mentioned aspergers and that she thought maybe I had it...finally I had an explanation. No more thoughts in the back of my mind of 'where the hell did I come from, what am I.' That is why I was self diagnosed before becoming officially diagnosed...not because I wanted an identidy to fit in with, I already considered myself a metalhead due to my obsession with metal music.

Not because I wanted attention or to be a 'special snowflake'... though maybe some acknowledgement of the real difficulties I had been aware of having since childhood. I could be dead on the streets of a drug overdose or purposeful suicide if I had continued my self blame and increasing self loathing of everything that had gone wrong in my life. I was convinced I was just a no good degenerate and I didn't care about what happened to me really. And even after the knowledge I had aspergers and my official diagnoses I still struggled with those feelings but it has been gradually improving. All because I decided I had aspergers, I wouldn't have bothered seeing a professional diagnoser if I thought maybe I might have aspergers.

That is why I don't want to discourage self diagnoses, if it might give others the enlightenment that they aren't such a no good degenerate after all. Not to say everyone who self diagnoses feels that way...but I doubt I am the only one.

No it was not.

And where do you get that the self diagnosed feel no one can tell them differently about having autism? That certainly wasn't my attitude if it really was something else I wanted to know which also factored into my going to be evaluated for diagnoses.

As for Post Traumatic Stress disorder, perhaps you shouldn't try to speak for people with that either...it's more like aimlessly not latching onto anything even if you would like to participate.

Fight Club actually had support group tourism...they pretended to have the disability/illness to go to group therapy sessions but did not keep up the act outside of said groups.

Awww...thank you Sweeleaf. I for one am very glad that you are not dead on the streets.

Was it easy for your parents to accept and understand?

You sound like you have a supportive sister there.

My feelings exactly. If the alternative to self-diagnosis is this extreme level of self-blame, then I would far rather have people 'wrongfully' guessing they're autistic and finding the courage to keep living, instead of becoming just another statistic.

Well my mom didn't want to hear it at first and even sort of got on my sister cause she thought the suggestion I had some condition would upset me...when in fact I was glad it was brought up. She did come to accept it just fine, though sometimes she seems to think I should be an open book about it but I feel that would cause people to see my identity as autism and nothing else but I don't hide it.

My dad doesn't not accept it but he doesn't really see the significance...I mean he grew up in the woods of Northern Minnesota, he accepts me and knows i struggle but the terms autism and aspergers don't mean a whole lot to him.

And yeah don't see much of my sister since she is always busy but she does try and be supportive...not so much when we were teens we didn't get along terribly but she did kind of try and get under my skin sometimes and could be inconsiderate.

That is a very good point. I think too that the fact that this conversation thread is belabored at this length speaks to the fact that even those of us without an "official" diagnosis (myself included) are likely somewhere on the spectrum or close to it.

I think there is a big difference between being self-diagnosed aspie/ASD and the girl who got her psychologist to blind her. Maybe if someone were requesting brain surgery to "make" them autistic that would be closer to the equivalent.

And on the initial article: I am curious what cereal box this psychologist got his/her license from and how is blinding a pt anywhere close to a "treatment?" ! !! ! What about "first do no harm?" No matter what body disorder this woman had i can't imagine that to blind her was a successful treatment. And a psychologist doing it in the office--a lot of holes in this story. It is not very believable to me.

But--let us say a dr truly decided that if this woman wanted to be blind, this was a viable tx option for her. What sane psychiatrist would do such a procedure in office? It would be terribly painful and she would need medical intervention of some type. Pain meds if nothing else. Drain cleaner in eyes could go so very beyond just blindness if a mistake were made. Brain damage, death, or lots in between. I don't buy this article at all. Either it is a hoax or there is more to the story.

And i don't see how this type of discussion or "theory" is helpful. Seems to bring out the "autistic-er than thou" mindset or simply cause questioning between otherwise well-meaning people who didn't need discord sown between them.

I think the condition is probably hard for certain people to come to terms with. Especially people like your father who has known you all your life and accepts you for who you are.

Something that occurred to when reading this is that it is sometimes down to us to be tolerant of the lack of understanding in society. However frustrating that may be sometimes.

I for one do not divulge to people that I have Aspergers. I have no family except for y daughter (she knows of course).

I was diagnosed 10 years ago and it wasn't because I thought I had Aspergers it was because I was already in the mental health system. I had many many problems, suicidal, violent tendencies, couldn't settle down and couldn't look after my own daughter either. I was roaming the streets at night and doing drugs and looking back I was indeed extremely vulnerable.

It was a psychiatrist who actually sat me down and ran through a questionnaire with me in the end. He didn't diagnose me but he referred me to a specialist in the field of Autism. It was the most bizarre of times for me. I got diagnosed with AS and ADHD and although at the time it absolutely shook the foundations of my world I was able to look at my diagnosis and I finally understood myself.

It took me a while still to focus on my life but I would say that I have gone from strength to strength. I got my daughter back. Found somewhere proper to live. Tried to get an education but I'm not the academic type but I work and support myself.

I'm not saying that it's been a walk in the park for me but my life is far far better than it was.

Actually there are some parents who do push for a diagnoses when their kid is normal. Those parents are called as having Munchausen by Proxy and one of them did appear on the Dr. Phil show. Her kid was actually normal but the mother insisted he wasn't so she went doctor shopping until a doctor agreed with her. He was even diagnosed with AS and he said he was not autistic. He had different labels but was then restrained from his mother and chose to live with his father and the mother was convinced that her ex was telling him lies about her and alienating him from her but the son said no he made that choice, not his dad.
This is scary stuff right here and I was happy the kid wasn't so messed up and he seemed to turn out fine.

Last edited by League_Girl on 28 Oct 2015, 11:44 am, edited 1 time in total.

I thought of Munchausen-by-Proxy but let's face it, even the entire condition - spanning any one of a number of possible methods on the part of the parent - is rare among the general population. (Even if you double or triple the estimates to account for possible non-recorded cases you're still talking about a very small portion of the population.) Taking into consideration that displaying M-b-P specifically as "autism" (and not, for example, poisoning the child's food, encouraging falls/accidents, etc.), we are probably talking about a minimal percent of what is already a minimal percent...Which again would not make this a "theory" that would span a significant portion of the population and probably not meriting a sweeping "theory" to explain any sort of statistical significance. And even if there are such (obviously very rare) cases, in that case, it's not a question of coming up with theories (such as the OP's) in order to prevent people from "pretending" their children have autism, it's a question of coming up with ways to better look out for M-b-P overall, because that's what has caused the deliberate falsifying, M-b-P, not some giant "autism is cool" trend. M-b-P is its own, specific mental illness.

Also...look, not trying to pan the show or those who watch it, but...come on. Dr. Phil. Just sayin'. I mean I'm sorry to say that but...really. You're talking about a show that relies on a degree of sensationalism and "DID you KNOW about this DANGEROUS AND FRIGHTENING ISSUE?"-esque stuff (complete with pannings-in of Dr. Phil's famous "do you BELIEVE this stuff, folks?" face) and therefore, there's not really any reason to believe the stories are always non-exaggerated or even have been confirmed, or that details haven't been left, out, etc. (unless one does follow-up research oneself). Not saying there's no way that particular episode was factual but personally, I'd do my own homework first before believing a Dr. Phil episode without question. They need ratings, they get ratings.

Honestly what we have so far as far as solid support for the "faking autism" idea is a fictional semi-fantasy movie, a horror story about a woman deliberately wishing to be blinded (and already put down to a disorder that isn't related to autism as far as we know but is in itself its own condition) and a Dr. Phil show. I don't want to sweep away anyone else's theories/ideas but for me, personally, this really isn't adding up to evidence of a larger and significant problem.

By the way, was that eye-blinding story ever vetted? And/or explained in any detail? Faux News' article seems very vague.

I don't remember the details but I remember there were both sides, the mother's and the son's and ex husband's. The other claimed her son had all these issues and said her ex was alienating him from her and won't let her talk to him and saying he was lying to him about her but the son's side was different and I could choose to believe the mother and assume the son and father are lying. But I don't see any reason to believe there wouldn't be a parent out there who would push a label on their normal child. There are crazy people out there and some things are so crazy, some people don't want to believe it so they decide to think it's all made up or exaggerated. Some people think I make things up about a boy I used to know who was violent and threw an ax at my brothers nearly hitting them with it and how he broke kids bones and gloated about it because they don't want to believe a kid can really be that bad and be that capable unless I am crazy or the kid was lying to me about breaking kids bones but I don't see any reason why my parents and my brothers would lie to me about him and I have heard him hit his mother when I was there and seen how he treated her and I don't see any reason to think my mom would make stuff up about him about stuff he has done.

People will believe whatever. If something is so uncomfortable to hear, they can just choose to believe it's not real. I think that is how people operate.

I agree that Munchausen's by Proxy is probably incredibly rare. But there is one situation that troubles me, with low-income parents seeking a disability ruling for their children, because SSI pays better than welfare:

http://www.boston.com/news/local/massac ... e_effects/

This article focuses on kids being wrongfully diagnosed and medicated for ADHD, as a work-around for welfare limitations. (I'm not sure if this is happening with ASD as well, but it could be a potential motivation.)

Yes, that can happen, but for some of us, we don't want to get upset/disturbed about something that may be being misrepresented, so we require at least basic evidence for a "shocker" story before getting upset about it. Nothing crazy, but at least something that supports the assertion being made. That's where I'm coming from, anyway.

I may be overly-logical but this is usually how I operate, especially as regards "viral videos" (i.e. the blinding), shows that are known to utilize sensationalism in order to get ratings (a standard M.O., I'm not saying they're The Debbil or anything ), etc. Again, if there's anything concrete about these stories, of course I'll believe them; I don't automatically disbelieve them, I realize there are "crazy" people out there, just saying a. I see no reason to believe without questioning, especially in a venue (internet, talk show) that relies on grabbing people's attention and would be interested in seeing links to some sort of evidence for them, and am also saying that even if true, they don't seem to necessarily support that faking autism, etc. is some sort of a larger or growing problem or whatever. That's just my personal view of all this.

I'm not trying to pick on your ideas, I hope you don't take it that way.