Is HFA misdiagnosed as Asperger's?

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Zoonic, whether or not a person is a "psycho killer" or a civil law abiding person deep down inside has nothing to do with whether you are autism/Asperger's or a neurotypical. It has to do with your basic makeup as a person.

Moreover, you complain about being lumped in together with all the other Aspies, and you sort of disparage autism. I can assure you it is much worse from the other side, being mainstreamed as if you are a neurotypical and forced, often through sheer torture, to comply with all the neurotypical things your brain configuration does not allow you to be. It can be highly damaging.

I am a child of the mid-1950s, grew up during the 1960s-early 1970s. My Mom had a teaching credential, and was in a doctoral program in special education, educational psychology, and working in research at a College of Medicine, when she got my early infantile autism diagnosis -- Kanner criteria. But, in that day and age, it was a felony criminal act once a parent found out their child had autism not to instutiutionalize the child. So, my mother hid my diagnosis from the schools and the authorities, and forced me to live like a closeted gay person, mainstreamed into the life of the neurotypical I was not and can never be. I did get the benefits of 7-day a week intensive autism interventions and many, many activities through my Mom outside of my secret public school life masquerading as a neurotypical. But this still does not, no matter what others may say, turn a person with autism into a neurotypical -- our brains are still wired differently.

My life was the tragedy of always being told "why can't you do things as well as the others," or "why can't you do this like other people," and "what is wrong with you that you can't do this like other people," no matter how hard I tried or how incredible the accomplishment I achieved would be for a person with autism. It is a life of always being compared and found to be ranked at the bottom of the stack and found lacking and incapable. Had I been able to "come out," as it were, with my autism diagnosis as a child, while still being mainstreamed, others would have recognized even some of my more insignificant achievements were amazing and incredible for a person with autism. I have bi-lateral hypoperfuson in parietal and temporal lobes, and should not have been able to paint like Michaelangelo, ride jumping horses to a U.S. National Championship, drive a car, graduate law school and pass the hardest bar examination in the Nation, but have done and still can do all of these things. Yet, for 20 years, no state will give me the lawyer license I worked and earned through so much struggle to achieve, because of their fear of autism and their concept that means I can't do it, and that based on previous neurotypical comparisons under which they assessed me, I rank at the bottom.

There is also the matter of the severe and unrelenting bullying I suffered in K-12 schools because of all my speech and other odd little mannerisms, hand-flapping, and stimming, that drove my teachers and other student nuts. In 8th grade, I was tricked into going out on the playground to see something, whereupon I was ambushed by about 40 other 7th and 8th grade students who ripped off all my clothes and shredded them and left me naked, while no less than 60 other kids and 12 teachers watched in hysterical laughter -- and no one did anything about it. On a frequent basis, on my way home from high school when in the 9th grade, 12 graders would pounce on me and shove my head deep down into snow banks to try to suffocate me and hold me there gasping for air, while bus drivers looked on and no one informed of this did anything to stop it. In 6th grade I was cast as the witch in Hansel & Gretel and forced to play the part, because it was sport to watch the weird kid typecast as a witch. In 7th grade, I was pulled out for 20 minute periods and forced in front of my homeroom of all my peers to recite the pronunciation of a word hundreds of times while being ridiculed by the teacher, because of my autism I could not say it right. I could go on and on -- living life of a neurotypical while an person with autism "in the closet" was one of the most damaging and harmful things, and one of the greatest trajedies, that could be visited on someone's life.

At least, if I had been able to "come out" with my autism diagnosis with the highest order of probablility of automatic institutionlization and destruction of my life and freedom, I would have received so much more support and encouragement, recognition, and help along the way of the things I have achieved. But most importantly, for me, I would have been able to stand my ground and reply to those who ceaselessly tortured me "why can't you be like the rest of us cookie-cutter neurotypicals," my brain is wired differently than yours and that is who and what I am -- your autism diagnosis is your declaration of independence that does give you your freedom.

You need to reflect on and consider that from another perspective, before you complain so much. You could have had it worse -- living the life tragedy I have been forced to endure for far too many years, before I found the greatest neurologist on the planet who is helping me take my life back.

corr:
"with the highest order of probability" = without the highest order of probability

apologies for the typo -- I also have vision impairments.

Thanks for all of that, I've been trying to learn the differences. I was diagnosed with HFA and I DO feel sort of different from what a lot of people on this forum describe.

But I don't think I was especially monotone or uninterested in what other people had to say, like the two kids described by the OP. I did stare blankly a lot though.

This whole thing is still kind of a mess, I guess. XD;;; Still being sorted out, I mean.

I don't think you can compare it like that. I had it pretty good up until my diagnosis. I had NT friends and I wasn't bullied. I am not you and I never had a need to identify with others who have AS. I never had a need to be around others with AS. Until I got the diagnosis, I didn't really feel society was "against me".

As for being hospitalized I was sent in and out of child psychiatry for a few years every time I had an outburst as a result from all the frustration of being labeled, constantly threatened with hospitalization , dehumanized, losing my friends because teachers informed them about my "condition" etc. Inside of psychiatric care I was medicated with around 8 different drugs over the years, everything from anti-depressants to anti-psychotic medication and NO ONE realized that my outbursts were just a result of the humiliation, suffocation and total alienation I experienced because of the stigmatising label called AS. Should I be happy because the diagnosis wrecked my life?

Zoonic, I did not say I though 'neurotypical society" was "against me." Roughly 50 % of them have some issue with autism, but not all. The problem for me is neurotypicals tend to zig when I zag, and then there is the issue of a person being repeatedly demeaned over and being forced to be what they are not. It does cause damage, a lot of damage. My opinion is my life would have been far better with a much more successful outcome if I had been able to "come out" with my autism diagnosis as a child. But that is not the Country we live it -- they were also still lynching blacks when I was a child. It was not a very enlightened environment.

As far as the commodification of mental institutions, it is also a terrible tragedy. Wanting to find human commodies to fill hospital beds to keep institutions open to support the jobs of a bunch of neurotypicals is not an answer either. Some states, including Florida, are notorious violators of Olmstead v. L.C. ex rel Zimring, US 1999 -- the Supreme Court directive to close the institutions and provide community based support. Rather than using your anger to stop the violations in a way that will only harm your own interest and untimately your life, however, it is much more productive to work voters and gerrymander voting districts to vote out of office the politicians who continue the commodification of institutions by failing to fund the Olmstead community based support that would have prevented what happened to you.

There are no easy answers, but one thing is clear: People with autism and Asperger's have been victimized by ignorance and the bad policies such produces for far too long. None of us can change the past, but we can more wisely direct our efforts to best effect change in a more positive way so these things don't ever repeat themsleves and happen to us or people like us in the future.

I don't think you can comprehend being diagnosed with AS as a child and having people around you know about it. Do you think the tolerance and intelligence of the average society just goes up when someone gets an official AS diagnosis? Being "understood" is BS. People just patronize you more, subhumanize you and accredit your entire personality to AS if they are informed of the official diagnosis. People who work with AS diagnosed children in school treat them like lambs or pets, not like independent individuals.

Whenever I opposed the subhumanization and patronizing headpatting, everyone who knew about the diagnosis would become angered and react like "how dare an AS claim equal rights to us!?". Being diagnosed as a child means you will constantly have to listen to others explaining to you "why you do certain things yada yada" like for example in my case, I was told that "you hurt people because you don't have the empathy to understand that they get hurt, but you don't really mean anything bad with it! You just can't help it because you don't understand what is hurtful to others!".

The truth was in fact that I always knew exactly how to hurt people and if I hurt someone, I did it because I was angry and felt offended. Being constantly patronized, smothered and treated as if I had an IQ below 60 really didn't help me, I'm sorry to say but it actually made things a lot worse. The other kids in the AS class were like lambs with lower IQ and no theory of mind, they didn't mind being led and treated like cattle. I opposed being lumped together with these people and constantly dismissed as "AS". If I didn't want butter on my bread a teacher would say "that's because you have AS and want things very structured", if I liked the colour blue someone would tell me "that's because you have AS", if I was late they would say "it's okay, maybe your AS routines got messed up. We love you anyway "

In fact my main problems were always my cluster B personality. I just happened to have very light AS in addition to this. I recieved a diagnosis I didn't need and was maltreated, repeatedly institutionalized, lost my friends, my self esteem and started to hate the entire world thanks to my AS diagnosis. I say again, I honestly don't think you have any idea what it means to have AS diagnosed at a young age. If you are okay with being treated like a drooling r-tard with 0 theory of mind, I guess that would make you happy, but if you have any individual awareness, independence and call yourself an intelligent being, you would experience the same insane alienation and dehumanization I went through and realize an AS diagnosis is a trauma.

You're an adult now. Right now you are currently putting yourself in a place with people you supposedly don't want to be lumped up with. Doesn't make sense.

It also doesn't make sense that one of your first posts had to do with you being a psychopath/narcissist and someone with aspergers and I noticed that anytime you had a fault you blamed it on your aspergers and then in other threads you say you don't have aspergers at all and are upset that you were falsely diagnosed.

It comes across as though your roleplaying to make a point. What is your point?

You are contradicting yourself.

If you don't like glassy eyed dolls as you put it, why are you here?

If you feel that having the label aspergers means inferior, why are you here?

If you were really diagnosed with aspergers as a child but you had something else going on like you say personality disorder and it's clear that it's not aspergers, get a re-evaluation. Pyschiatrists aren't always correct.

Having just a few traits of autism or aspergers doesn't make you autistic. Anyone could claim their obsessive interests and say "Oh because I am completely obsessed with my top 40 music, I must be autistic."

Having obsessive interests is a common trait with autism but if someone reads that without really seeing it for themselves, it could be taken in a false manner.

This makes me wonder how many children that are showing early signs of conduct disorder are being labelled aspergers because if you're being serious, this shows just how conflicting the two are.

Do you think your parents didn't want to hear a certain diagnosis and left it at aspergers?

I don't think everyone here is part of a group hugging, glass eyed wax doll community. I don't think autists have a natural way to "bond" with each other.

I have the right to inform about the dangers of an AS diagnosis, the existence of non-stereotypical people with AS and the fact that everyone isn't helped by a diagnosis.

You clearly see the world in black and white. I won't even respond further until you start realizing even AS people are individuals and not everyone is necessarily a glass eyed doll with the need to bond with others who share the same diagnosis.

Yes, I know for a fact my parents thought of asperger's as a more "humane" explanation and even lied to each other that I didn't "understand I was hurting people" to make me seem less "evil". They didn't want to think of me as a calculating sadist who showed deep hatred for human beings already in kindergarden. I do think however that I have a light form of AS as well, and yes these conditions are very conflicting.

Most countries are 10-15 years after Sweden in research and understanding of AS. What I see happening all over the world now is a kind of religious AS-hype similar to what went on in Sweden 15 years ago. Parents who want their children to be lambs, everyone self-educating themselves on AS, everyone self-diagnosing thinking they have it, people who get diagnosed in adult age seeing it as a "relief".
How many young people will be raped and have their lives destroyed by this diagnosis just so the AS-huggers, fanatical overzealous Münchausen mothers, adult diagnosed and self diagnosed people can be happy in one big AS collective?

Last edited by Zoonic on 20 May 2009, 9:31 pm, edited 3 times in total.

I wouldn't have minded being treated like a lamb or a pet, that would have been a welcomed change. I prolly would have been better off with teachers and specialists who knew a lot about me. When I went to the University's Health Sciences Center to get evaluated and tested the people were always so nice to me I craved that kind of interaction elsewhere.

The people who worked with me didn't know s**t about me. They had just memorized every book ever written on the subject of AS and projected what they had learned onto me, but it didn't fit and didn't explain why I did certain things. I just got violated.

Sorry if this sounds harsh or patronizing but seriously you have the emotional maturity of a ten year old. If you don't feel like you get enough respect, well that's the reason right there. It has nothing to do with having an AS label or being put in a class with autistic kids. I think that's a subconscious excuse. Acting out and making yourself the center of attention got you friends as a kid because kids like being amused and entertained. It's as simple as that. That isn't real social skills though and it won't help you form lasting social relationships as an adult. You're making excuses to avoid facing that reality. If you don't want to feel like a little pet lamb you're going to have to use your intelligence.

Although i've agreed with most of what you've said and i agree there can be dangers to diagnosing a child with autism, i don't think you appreciate what it is like to live well into your adult years and then recieve a diagnosis. You say you were diagnosed at 12 years old? that's very young. At that age you can still get away with being an odd-ball. At twelve people might think you have your quirks, but they don't see you as weird, they see a personality. Of course you could still fit in with your NT peers, of course you connected. Even without a diagnosis you would have slowly been dehumanised, people are very cruel.

kittenmeow & marshall (especially), don't you two think you are being a little harsh on Zoonic ? Does having Asperger's certify you are a person who always at all times behaves as an adult ? I understand Zoonic's got a little bit of a chip on the shoulder because (and it seems to me rightfully so) the mistreatment received in institutions.

First, let me say, I have high functioning autism and am not an Aspie. You Asperger's folks run circles around my social and employment abilities, which are of a far higher level than mine. But I am a prodigious savant and I do have a law degree, along with a lifetime of tragedies and struggles. I think that's enough to say in my opinion I think you are being too harsh on Zoonic. Have either of you spent even one nite in an institution ? It is no picnic, believe me. Although I have never been institutionalized or subject to anywhere near the abuse Zoonic described, I have personally seen some of this abuse, unncessary restraints, beatings of a restrained person with leather straps by more than one staff ganging up, minimum of 16 horse-sized syringes of who knows what injected into the victim. I don't know what you guys call this type of mistreatment, but it is in my opinion, it is torture and violates not only the Geneva Conventions but several other treaties the U.S. has ratified with the international community against cruel and inhumane treatment.

I can't speak for all you people with Asperger's, but I can speak for people with autism since I have autism, and I can tell you not all people with autism behave at all times and places like adults. Autism, and I suspect for some with Asperger's, too, is a spectrum condition that frequently due to the brain configuration, makes people behave as if they are children who never grow up in perpetuity. Some of us tend to see things with the same naive innocence as children, so it comes as quite a shock for those of us who become subjected to the type of cruel and inhumane treatment someone like Zoonic experienced that other humans act like animals. And Zoonic does have the observation quite correct, that many people working in the institutions don't care whatsoever about the people forced to live there; in fact, they probably care about and treat their dogs and cats better. Is there some problem with people who see the world through the eyes of a child even as an adult ? I think it can be rather refreshing, in my experience.

Also, I do think Zoonic has a rightful complaint, that people subjected to some of the abuse going on in American institutions are willy nilly over-medicated with sometimes outdated pharmaceuticals with more similaries to the caustic charactersitics of swallowing Draino. I am not necessarily against pharmaceutical medications, but some of the drugs used in our institutions have significant life altering side-effects that, by analogy no one would give a person to treat a physical condition such as heart problems or even cancer, and the pharmaceutical industry really need to develop better targeted medications with less serious side effects for some of the co-occuring psychiatric conditions that can occur with or separately from autism and Asperger's. Being forced to take some of these medications, or worse yet numerous experimental cockatails of them, for years and years, can really have adverse repercussions for people. I am actually surprised Zoonic is coming across so well, given the things that have occurred, as described.

Isn't this a forum where people with autism and Asperger's are able to come together and get away from some of the neurotic neurotypicals that congregate on other blogs and forums ? Where people with autism and Asperger's can feel they are able to talk about autism and Asperger's subjects that are profoundly difficult to discuss with neurotypicals and others in other venues ? I think Zoonic is bringing up a legitimate issue.

The fact some of us are irritated by the manner in which Zoonic perseverates on the lack of justification for some of the things done, or lashed out at the Asperger's diagnosis as the cause rather than the real culprits--the institutions, does not trivialize the significance of the issue. I think Zoonic needs to hear that someone is sorry for the injustice and abuse that was done, and I think until someone expresses that this sorrow, Zoonic will keep asking for validation to hear from someone that the abuse that was done was very wrong and harmful. I did leave a response to Zoonic on Zoonic's Hitler thread.

But, at the risk of becoming the target in substitution for some people's frustration with Zoonic here just for my speaking out, can't you guys just have a discussion about the issues with Zoonic and not be so unnecessarily harsh ?

If the source of frustration is, on the other hand, finding there are people here with some of the characteristics of autism or Aspergers that are irritating in comparison to neurotypicals on neurotypical mainstream forums and blogs, why don't you guys migrate over there for a more *normal* discussion ? I think Zoonic has raised some valid points, and I think they deserve to be discussed without regard to the delivery. And I, for one, would like to hear them.

You don't know my life story so quit pretending that you do.

I believe as much as 50-60% of all people diagnosed with AS are in fact autists in some form who have been misdiagnosed.

The reason why I can't "identify" with others diagnose with AS and why I think they are below my level is because they aren't AS people, they are misdiagnosed autists. I definitely have AS but a lot of the people with the diagnosis have high functioning autism. The criteria should be remade so that it's impossible for HFA to fall within AS as they do today.

I'm a cluster B personality type, that explains my emotional state. I despise ugly, drooling, sh***y low functioning aspies and I enjoy using my superior acting skills and theory of mind to bully them in public. I don't care if I get banned for this, I just hate those as much as I hate people with down's. The only aspies I can identify with and respect are the really high functioning ones, like Adolf Hitler.