Inconsistencies regarding Amanda Bagg’s Past History???

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I have decided to start a new thread in response to “ShellyH” from an older topic regarding this as I feel that it is of great concern to me. I know that Amanda Baggs is already a notable person in the ASD world as an advocate for LFAs, and indeed she writes eloquently, however I have spoken to 2 people (DONNA WILLIAMS in person, and one of Amanda’s best friends in Primary School by email) who provide anecdotal evidence that in conjunction with my Medical reasoning, suggest that she most likely doesn’t have genuine (Low-Functioning) Autism as Clinically described by the DSM-IV, but instead with Medication/Drug-induced neurological damage which results in several Autistic-like traits subsequent to induction/treatment of Schizophrenia. An extreme alternative could be that Amanda Baggs actually has undiagnosed Asperger Syndrome but her difficulties and Autistic-traits became supremely amplified following her consumption of various Medications/Drugs.

I’m not trying to bash Amanda Baggs as I’ll be providing my reasoning in a coherent logical manner with no swearing. I think this is an extremely important topic to discuss and not to suppress, because like ShellyH implied, if the ASD community (including LFAs) is to have a role model or a spokesperson whom discusses living with an ASD (eg Temple Grandin, Daniel Tammet and Stephen Wiltshire), then that person MUST have an ASD, otherwise it is a misrepresentation/hoax. And we all know what it’s like to see the frequent misrepresentation and exaggerations of ASD people in news reports, movies, novels and internet forums.

Whilst medical discoveries regarding ASDs are occurring more often since 2000, and more people have heard of ASDs in general, accuracy in representation and identity is crucial if we want to progress and improve our image in society as Autistic individuals, otherwise we’ll be thought of as a joke in the future by others. We can already see this to a mild extent, by lots of NTs on the internet not taking AS seriously and thinking it’s overdiagnosed or “just an excuse for being an antisocial jerk” thanks to numerous people (after 2000) who claimed to have it despite not having a diagnosis and not satisfying the other criteria as stated in the DSM-IV, eg narrowed interests, difficulty without routines, seeing parts of objects etc.

To quote ShellyH as a refresher:

Now, there is a man called "John Best Jr." that ought to be condemned (and rightfully so) for his irrational beliefs regarding Vaccinations and Autism and his general hatred of ASD people in general, and he operates a hate site on Autism and also hates Amanda Baggs, so I will fully disregard him to reduce Selection Bias.

The woman who claimed to be one of Amanda Baggs’ best friends in Primary School (Latimer Primary School located in San Jose) said that she was completely shocked at the change in Amanda since childhood, considering that Amanda was highly verbal at primary school and very gifted, playing various musical instruments, speaking multiple languages, excellent at physics and algebra, had lots of friends, and took part in a local production called “Annie”. In fact Amanda and her celebrated birthdays and took dancing lessons together. I believe she lost frequent contact with Amanda at around the age of 13 or 14, a bit before Amanda started attending an accelerated College called Simon’s Rock College.

Btw this woman has NO relation to John Best Jr, and she has a son with High Functioning Autism attending Primary School, and is supportive of the ASD community, and has no financial or jealousy incentives to discredit or lie about Amanda’s past history. Her anecdotes also logically correlate with the anecdotes of others who attended Simon’s Rock College with Amanda. This woman is also extremely confused about Amanda Baggs’ situation, and nevertheless praises Amanda for telling society not to immediately dismiss the Non-Verbal ASD community and wishes all the best for her health.

Now to my current Medical knowledge, neither me nor that woman is aware of any ASD that would involve such severe physical regression at such a late age, especially considering that Amanda Baggs was still highly verbal, social and physically active at age 13/14. Apart from possible undiagnosed Asperger Syndrome which imo is still unlikely due to not satisfying sections (II) and possibly sections (I) and (III) of the DSM-IV criteria for Asperger Syndrome based on her Primary School years description, the next closest alternative could be Childhood Disintegrative Disorder which is also rather unlikely.

Childhood Disintegrative Disorder (CDD) is also part of the general PDD group but is statistically much rarer than Asperger Syndrome and Autistic Disorder. CDD usually involves typical development in speech, communication skills, cognitive skills and motor skills, but then there’s a period where some of these skills degrade rapidly, hence the eventual developmental delay. Loss of skills usually occurs in the age range of 3-5, with age 10 at the very latest. It is doubtful that Amanda could have CDD because if that was the case, then her primary school friend and other classmates would’ve noticed it at Grade 5, which wasn’t the case, and there have been no mention/comments about any CDD symptoms (which would’ve been very obvious by age 14) or major academic accommodations provided at Simon’s Rock College.

The diagnosis of Autistic Disorder at around age 14 is also illogical and doesn’t make sense, as this doesn’t correlate with her extremely high functioning (verbal, physical, social) in Primary School, Middle School and Simon’s Rock College. By the descriptions, she is far more verbal and socially fluent than me when I was at Primary School (and I’m diagnosed with AS). She may have been diagnosed with Autistic Disorder at the typical age range of 2-6 (by paediatricians in the Western World), but her extremely high functioning in a ***broad range of areas*** as mentioned by her friend by Grade 2 would suggest that such catching up and acceleration is extremely unusual. Temple Grandin is now considered HFA and was diagnosed with Autism as a child, but even with her analytical mind to understand social rules at an intellectual level, had a lot of trouble socializing at primary school. Yes I’m aware of Savant skills in some Autistic individuals, such as Stephen Wiltshire, but Autistic Savants typically don’t feature a history of very high functioning in numerous areas, followed by a dramatic decline in those areas (including speech) during teenager or early adulthood. Their skills outside of their Savant skill typically stay static, or gradually improve over time, and not drop flat like weight to near-nothingness.

The diagnosis of Rett Syndrome in Amanda Baggs’ is out of the question, as regression of skills starts occurring by 18 months.

(To be continued with my conversation with Donna Williams and other medical hypotheses)

I guess I don't understand why this is important. The specifics about her history and DX don't change the efficacy of her advocacy work. So how does this minutia matter?

Yeah. I was gonna post something similar.

Why should we care about her diagnostic history? It doesn't change any of what she does.

And also... I'm fairly certain that she posts here. Why don't you just speak to her directly if you're curious or have a problem with something?

It does matter, because she's currently claiming to have Autism (LFA), when the anecdotal evidence implies otherwise.

I value honesty, and while I respect her eloquent writings regarding the request of not neglecting non-verbal/LFA individuals, that doesn't entitle her to call herself Autistic, unless she truly is it.

This isn't minutia, because if in the future she is revealed to not really have Autism but some form of neurological impairment, eg from the medications that she takes, then the words that she says regarding her life lose accuracy, and people in society will be less likely to take future ASD advocates seriously. I'm concerned about our image and our future, that's why I wanted to discuss this rationally.

You're taking a very black and white stance here. The whole point of describing autism as a spectrum is that there are no clear divisions between high, medium and low function. In fact, there is a lot of disagreement on how to even define functioning levels. If Amanda turns out to have been pushed into a low functioning category by medications and injudicious treatment choices all it tells us is that autism can be made worse. Her advocacy work and writings come from a perspective of a putatively low functioning individual. This output of hers is still relevant to addressing the needs of other LFAs. The details of her history can tell us a great deal, but suggesting that it invalidates her point of view and diminishes her value to the autistic community does not bring anything useful into the conversation.

We can't have a person who doesn't actually have a condition represent us as people with similar conditions.

Just as I can't say I have HIV/Cancer/Diabetes/Lupus (when I don't have any of those conditions) and become an advocate based on that claim even though I respect individuals with these conditions and can do volunteering work to help improve the daily lives. It would be incredibly disrespectful to these people, as I'm not a true reflection of them and I don't know the pain and stress that they go through.

And while Amanda Baggs does feature Autistic-like traits and definitely has a lot of struggles and is very verbal (written-wise) about her daily difficulties, the anecdotal history that I've read from her best friend in Primary School (who still wishes the best for Amanda) and the history that I've read from other sites gives an incredibly suspicious profile that isn't an ASD of the current Medical knowing, but an alternative Neurological disability through another cause, especially drug/medication induced (heavy prescription of Antipsychotics, and heavy use of LSD, Psilocybin in a short period of time prior to psychosis).

I'll continue typing further details in this thread, providing it is not shut down, but I will contact Amanda and ask her for further details about her history if she doesn't mind, to see if it correlates with her best friend from Primary School.

I need clarification. The less accuracy we have in our representation and work, the more ammo we give to the ASD-haters and other ignorant people such as John Best Jr to use against us.

I'm aware that Autism is a spectrum, HOWEVER your interpretation of "being pushed into low functioning category" is incorrect, as current Medical community sees Autism as being of neurological origin from birth, with potential epigenetic factors (in early stages of life) that have yet to be discovered.

There are MANY drugs and forms of brain trauma that can result in Autistic-like traits, but we DON'T call them Autism, because it would confuddle the etiology. We don't call a severe chronic alcoholic (with brain damage) an "Autistic" because he can't speak anymore, nor do we call a person who received a lesion to part of his (Medial) Prefrontal Cortex which impairs social judgment "Autistic" because that wasn't from birth. The damage to a person's brain that results in "Autistic-like" traits is helpful for Medical Research coz it can help identify the Neurological basis of Autism, however until the ENTIRE Psychiatric establishment changes their definition of ASDs to allow it to occur in adulthood through accidents and drugs/medications, then Amanda Baggs' claim of having Autism is medically inaccurate and not properly representative of people with LFA, despite writing in an eloquent manner.

Are you suggesting that she is not autistic? You seem to be splitting hairs here. Because she does not fit your definition of LFA, you seem to be building an argument to re-categorize her. This is just circular reasoning.

The diagnosis of autism is not connected to HOW you got there - mostly because we don't know how any of us ended up here. It is diagnosed based on exhibited traits and behaviors that have been present since early childhood. And functional levels are not constant. I know that my functional capacities are variable. While I will always be very HFA, I do have periods where my cognition is definitely suppressed.

You seem to be attacking the validity of Amanda as a spokesperson for LFA, but you are basing your argument on a pedantically rigid idea of what LFA is and how one gets there. How does her advocacy harm anyone?

Oh, I'll just say you haven't looked enough or you're excluding or reinterpreting information that you probably have that clarifies everything.

I don't see:

How Amanda's personal history is any of your business. Although she has written a lot about it, including parts that answer every question you have. So I do have to wonder how you so selectively managed to avoid those answers while coming up with the same set of questions that others have brought to this forum in the past.

What makes you think she's ever tried to represent anyone but herself?

What makes you think that a friend from primary school can possibly accurately determine whether Amanda is really autistic or not? Childhood memories from a friend can't possibly diagnose or undiagnose someone, and said friend certainly cannot provide sufficient understanding of Amanda's history to make that determination.

I don't see how this thread is anything but insinuation and attacks. Any controversy that exists has been manufactured by people who, for some reason, are invested in attacking a disabled woman who has done them no wrong. In other words, this is just a form of internet bullying.

Could you read my previous post please (I posted 2 minutes just before you). The point is that none of the traits that she has was present since early childhood, therefore her case is extremely suspect. I don't hate Amanda, and I commend her advocacy work, but I'm critical of her claiming that she is LFA when the Medical Establishment and anecdotes give an otherwise picture. I think it is possible for her to continue her advocacy work, but I really think it would be best if she admitted she isn't Autistic if in the future she is proven to have another condition.

I also get burnt out as well, and I don't like to talk to people, and I have periods of time where I just stay at home all day and can't concentrate on anything productive. However my medical knowledge suggests that burning out itself is unable to cause a complete absence of speech, as speech is neurologically initiated from a place called Broca's Area.

Her friend is concerned about Amanda and doesn't hate her, and neither do I. I'm concerned at a Medical level, and also at the level of ASD representation. You need to learn to make the distinction between pointing out a potential error, and hating somebody. Amanda has never harmed me directly, so I don't hate her. I was concerned about how a potential misrepresentation can affect all of us ASD individuals in general. And I'm not attacking her, just as a Doctor doesn't attack an obese person for informing him that he is obese. I don't derive enjoyment from internet bullying, and I don't feel that I'm being bullying coz I'm trying to reason things out and question it, and yes I've read some of her answers and I'm still confused about a few of them.

For example Amanda explained her speech decline (to nil) as being burnout over several years of trying to fit in as a person with LFA. However this doesn't make sense because if she was LFA in the first place, then she would never have been so verbal, social and physical during her primary school, middle school and Simon's Rock years, otherwise she would've been diagnosed with Asperger Syndrome or AD (HFA) in the first place, which is also confusing as she didn't have any difficulties socializing and with flexibility in conversations (which I as an Aspie still have at age 22 despite putting in so much effort to converse with patients).

Her friend never diagnosed or undiagnosed her, she simply told me what she remembered from childhood, to a good degree. Of course she could be wrong about her memories, but her information is quite consistent with other anecdotes about her at Simon's Rock College. And she has no relation with John Best Jr, who actually hates Amanda Baggs irrationally.

I will post the email that Amanda's friend sent to me. Neither of us hate Amanda but are concerned about her but about different issues:

Hello there,

I was quite shocked to see what had become of Amanda, particularly since we were such close friends in our early years.

Unfortunately I did not attend Simon's Rock with her, I had only gone to school with her at Latimer Elementary School, located in San Jose. She and I remained friends through the time of my middle school years, and as far as I had been informed, she had graduated High School and had started College around the age of 15.

In elementary school she would have been classified as a genius. She was always top of her class, spoke multiple languages, played violin, piano, flute and if I remember correctly, guitar. She was in the school's orchestra playing violin in first grade when others were only permitted in fourth year. I recall sewing dolls together in our childhood and while I was "teaching" them basic grammar in our games of school, she would be teaching them physics and algebra.

We attended Girls Scouts together, she was a member of our local pool and was an excellent swimmer. We were also in numerous dance classes together, for ballet and tap.

We celebrated birthdays together, I always remember her family throwing excellent parties-and she was never at a shortage of friends in attendance. She loved to sing, and was in a local production of "Annie" at about the age of 9 or 10. I remember always trying to dress in matching clothes as childhood girlfriends often do.

I remember some oddities about her childhood, like a slight speech impediment and things like smelling her food and staring at the chandelier crystals in her mother's kitchen. But I don't know if that has anything to do with Autism...I did those things at that age too =)

I lost track of her during my High School years, although I did receive a call from her at about the age of 17 or 18. I recall telling her of my (then) engagement. She had mentioned that she was currently living with (possibly visiting?) her parents at the time. I also recall her telling me that she had a service dog, which I thought was odd, but didn't really question it considering then I had heard the rumors of her drug use in college. The entire conversation was clear and comprehensible with no talk of any medical conditions other than her dog.

I was quite shocked to see the current situation she is living considering what a seemingly" normal" childhood we had shared. To see such a regressive physical state that she attributes to Autism was quite shocking, but I am not a doctor, so any suspicions I may have are only of a personal opinion, and I am not making any accusations one way or another. I am not, however, aware of anything on the Autism spectrum that causes regression of that level, particularly only on a physical level, without affecting the mind as well. The lack of her ability to speak is what floored me considering she was more brilliantly verbal than most adults at the age of 10, and seemed to still be quite verbal in our short phone conversation in our late teens. I also had only heard of losing speech due to regression early on, or not having the ability to speak from birth or very early years. If you have any information the can educate me on that information please let me know...I'd be happy to clear any ignorance I may have on the subject for my own well being and education as well.

My son has Autism, very high functioning, closer to the Aspergers Syndrome level. Although he does have some of the tics common with Autism, like walking on his tip toes, flapping of hands, making sometimes odd noises, focus loss and obsession on subjects, he is in mainstream school and is getting by fabulously. His academics are near the top of his class, he does have social and behavioral delays sometimes common with Autism and the fact that he was born 2 months premature.

I do wish Amanda the best in life. I truly hope this is an unfortunate result of a valid disease and not a hoax or a facet of her (supposed for both) Schizophrenia or drug use. She truly was one of my best friends in childhood and it does make me upset to hear that so many believe this is a hoax of her own doing. I'd like to believe her, and hope that it is only my lack of medical knowledge that makes me doubt some of the symptoms. I'm glad that from my very little "research" on her that she seems mentally as brilliant as she always was, and whether she is actually Autistic or not, her points about not discrediting the non-verbal community is honorable.

Because of medical problems she sees medical doctors regularly so there is no need for concern about her health. Concern about her being an advocate has been addressed by other posters.

How she got where she is does not matter other than from a medical research standpoint. And since she already gets extensive medical care, the people who need to know her medical history already do.

It's a non-issue as far as I can see.

I didn't say you hated her, I said that this behavior is another form of internet bullying. You may be an innocent proxy for someone else's agenda in this case, but you are repeating exactly the same story that multiple others have repeated, and your talking points are a pretty close match to what John Best has put online in order to attack Amanda's credibility.



You are determining this from one unknown person's accounts. Childhood friends (and that is assuming this person really is a "childhood friend") simply can't know the full details of anyone's developmental trajectory. You are also focusing on a label (LFA) that Amanda doesn't actually claim. I think you've also missed where Amanda has said that she lost speech twice, the first time in early childhood. She's also discussed having a progressive movement disorder that is often associated with autism (autistic catatonia, discussed in at least a few academic sources), and discussed skill instability (losing skills) in a manner that matches other autistic people (such as Jim SInclair, who refers to having lost the skill to read on multiple occasions).

As far as socializing goes, I've found that a lot of NTs fill in the gaps with what they expect. They may recall someone as socially flexible and adept while that someone actually was spending a lot of energy to function socially in the first place. I am also uncertain how a school age child could clinically observe someone else's social functioning to the point of accurately determining where her difficulties lie. In my experience, children are simply not quite so discerning.



And yet has the same narrative he has posted repeatedly.

I didn't literally say her friend diagnosed or undiagnosed her. I said her memories can't diagnose or undiagnose anyone.

I am extremely skeptical of both what you're saying and - generally speaking - everyone who repeats the same story. I followed this all over the internet some time ago after stumbling across it looking for something else, and I find it difficult to accept that so many random people show up on Wrong Planet with exactly the same set of concerns, professing to perfectly understand one person's developmental trajectory based on anecdotal, rather than clinical, observations. You say, for example, that John Best irrationally hates Amanda Baggs, but at the same time you repeat the same concerns that he brings forth. Don't you see how that can come across as less than earnest?

As a medical professional, are you really accepting a random person's reports of an autistic person's functioning and developmental trajectory in childhood? This doesn't strike me as very professional.

As far as I know, Amanda doesn't claim to be low-functioning, she simply describes how she functions. I am not sure what the point is to claim that her autistic symptoms started with drugs when she clearly describes them from childhood onward.

Yes, I've seen these claims before. Do you actually know who she is? Do you know she was really a student in the same school? Do you actually trust her over what Amanda's own doctors have determined?

I'd just go with this:

My concern about advocacy is in relation to the diagnosis itself. I'm currently confused and questioning about her diagnosis given the conflicting evidence between several sources, and I sincerely doubt that her best friend from Primary School holds any hatred towards her given that she's very supportive of her own son on the Spectrum. I've already mentioned that if by chance Amanda is later confirmed not to have Autism, then there will be inaccuracies in representation. Alternate example, if a wealthy person was a philanthropist and donated $1 million/year to an HIV charity and is supportive of the rights of HIV-positive individuals, that still doesn't entitle him to call himself HIV-positive when he doesn't actually have HIV. That is my main point : Accuracy.

Do not blame me if any inaccuracies appear later on then.

Anyway I'll re-read what Amanda Baggs (ambuend?) wrote in the past, and see if it makes sense again coz I'm currently very confused. I won't type about my discussion with Donna Williams as it probably won't be of any extra use in this thread. I hope Amanda's health improves in the future and I'll see what happens regarding her Psychiatric/Psychological profile later on...