I don’t want to hijack the thread with the side conversation, but I’ve spent most of my life with one (my sister). PM me if you’ve got any questions I can answer.
Mutism does not an autistic make. Incontinence is not a particular feature of autism although it can occur in the most severe who are often also with very low global IQs. Headbanging happens to occur in some severe autistic individuals but isn’t a key feature. The key features of autism are global communication deficits, dysfunctions in social function, and delays in the use of symbolic or imaginary play (which reflects later in a tendency towards concrete thinking an a relative weakness in abstract thought). A horse that moos is not a cow. This woman site demonstrates a mute person wth excellent communication skills, good abstract thinking skills (analogies, parallelisms, etc.), and some of the associated superficial behaviors of the most profoundly autistic. They don’t fit together. That’s all I’m saying. Beyond that I’ve restricted my comments to the meat of the points which really shouldn’t matter who is saying them.
BTW, Supirior, there is no dearth of studies documenting how the brains of autistic individuals differ from the “normal” population.
Zoe I am sure that Obsidian can be much more helpful than I, but in brief and in general … routines and predictability help. A high functioning autistic individual will be very uneven in their skill set but generally weaker in language based skills and often better in math and/or music. They may excel when a subject involve rote learning and be able to memorize long lists well, but fail miserably when they need to do compare and contrasts or apply a general knowledge set to specific situations. Think of the thought process as someone who can tell you every detail about each individual tree but understands nothing about the forest. They may notice different things than the rest of you as what is salient to them is different. They may have attention differences but it isn’t necessarilly attention deficit … it may just be that they have a hard time focusing on what others consider important because that is not all that important to them … something else is. I hope that helps some and again I am sure that Obsidian will be more useful with personal experiences.
Another excellent post, DSeid, but just one correction here - the third category (after socialization and communication) is “restricted repetitive and stereotyped behavior, interest or activities,” or behavioral rigidity as I like to refer to it. This, as you know, is where the restricted sets of interest (hyperfocus on one topic area), repetitive movements (handflapping, headbanging), preference for sameness, and so on are brought into the diagnostic framework.
While I’m sitting here with the DSM IV open, I’m looking to see where it suggests that Autism is not a mental illness, as KGS suggested. I can’t see anything that would lead one to such a conclusion. It would be odd if it were so, in fact, since the DSM is the “Diagnostic and Statistical Manual of Mental Disorders.” Can you point me to what led you to such a conclusion, KGS?
It’s a semantic difference, perhaps. “Mental Disorder” is an umbrella term that covers all neurological abnormalities, from schizophrenia to epilepsy. “Mental Illness”, as I define it, is specifically a chemical imbalance which affects high-end mental functioning, such as “hearing voices” or severe depression. Mental Illness can be treated by medication, whereas developmental disabilities (autism, Down’s Syndrome, etc.) or learning disabilities (i.e. dyslexia) cannot.
I just thought of something – perhaps that website was actually written by somebody else? Not saying it’s a hoax, necessarily…perhaps she had a proofreader who “prettied up” the dialogue so it sounds more like a normal person? Just wondering.
I know they said that the woman arranged the photo essay herself…but I wasn’t sure how she did that. Did she type it up? Did she manage to tell someone else what to say? Or did someone “interpret” what she meant?
Once again, I needed to put my suspicions out on the table, but the points made are debated on their merits (or lack of) whether she is “real” or a complete fictional creation. Maybe she had uncreditted “help” … ?facilitated communication? Whatever the case my comments about the content stand.
Hentor I was not quite referencing the DSM, although you are right that I should have. The third on my list is placed under I B 4 and II C in the current DSM.
Oh, [bZoe**, a little bit more advice. Be aware that a high-functioning autistic individual will often take things more literally than you may intend them and poorly understand any analogy you may make. As referenced by Supirior, (s)he may not get your jokes, especially if they involve wordplay. Also be aware of how much you communicate with facial expressions (eg the raised eyebrow) or body language and appreciate that (s)he may not get those signals. State the information you usually encode in those signals explicitly as well.
Those cites appear to be unattributed opinions from the web.
It may be a semantic difference, and you of course are welcome to adopt any defintions that work for you. People may or may not find them agreeable or useful. However, you claimed that the DSM disavowed PDD as a mental illness, and I find no evidence of that in the DSM does so. I also am not aware of anywhere where the DSM disentangles “mental illness” from “mental disorder”, although they certainly define and use the latter term throughout the manual.
So, I don’t want to quibble about semantics, but I think you were trying to make more than just a semantic point earlier when you claimed that the DSM indicated that the PDDs are not mental illnesses.
Its just that when I make a diagnosis of a PDD that is new to parents, I like to walk them through what I’m seeing by referencing the three domains of impairment, so they kind of just roll off my tongue at this point.
It’s also helpful in explaining the differences between Asperger’s Disorder and Autism - that kids with Autism show the domain of communication impairment that kids with Asperger’s Disorder do not. It’s also helpful for walking through differential diagnosis, especially from ADHD, with parents.
I’m sure you are correct.
It is deeply disturbing for parents of children with autism, like myself, to keep coming across what Amanda Baggs has to say about Autism, particularly as it is a condition that she has never had.
The Getting the Truth Out website is not the only place that you will find her. She has her own blog. She has made numerous You tube videos like this , and this. She has even been interviewed by Dr Sanjay Gupta on CNN, and, more recently, by autism advocate Donna Williams . She is heavily involved with Neurodiversity and the Autism Rights Movement.
She is a member of numerous forums such as Aspies for Freedom which is mainly populated by self-diagnosed “Aspies”, who are anti-treatment and therapy for anyone anywhere on the spectrum. They also ban from their forum any clinically diagnosed individuals with Autism and Aspergers Syndrome who are in favour of treatment and a possible cure.
From her own words on various google support forums prior to her “Autistic Disorder” diagnosis in 2000, at the age of 19 or 20: She spoke, read and was toilet-trained early. She was a gifted student who skipped Grade 2 and attended the John Hopkins Center for Talented Youth for a number of years. She left home at 14 to attend Simon’s Rock College , a university for younger, gifted students where she majored in psychology. She had a number of friends, including a boyfriend with whom she had a relationship. She smoked marijuana and took LSD “extensively” for a period of months. She became psychotic believing herself to be an elf, a probe, and a god, and that she was being controlled and told what to do by outside forces. She had hallucinations. She also believed that the CIA was spying on her. When she was fifteen, after a suicide attempt, she was hospitalized and diagnosed with paranoid schizophrenia. She apologized to the DID support forum after pretending for a considerable time that she had an MPD diagnosis. She was also diagnosed with Factitious Disorder.
When she was 17, she worked with autistic children, and she says she was fascinated by the behaviour of one girl in particular who was about her age. She enjoyed working with the children so much that at the time she said she was keen to finish her degree and become a special needs teacher. The following year she discovered the google autism support group and by 2000 she had her autism diagnosis, had set up a website with Laura Tisoncik, a social activist, and became mute.
Amanda’s many supporters believe that she actually has autism, that for many years she had been misdiagnosed with paranoid schizophrenia by “quacks”, that her current problems stem from all the drugs prescribed “in error” over the years, and the abuse she received from psychiatrists and staff while “institutionalized”. In fact, Amanda has only ever lived in residential group homes, and I don’t believe that can be called being institutionalized. As the parent of a son with autism, I would be most surprised to learn from any psychiatrist that Amanda’s Autism was misdiagnosed as paranoid schizophrenia.
The problem for us is that this person is pretending that the only official diagnosis she has ever had has been “Autistic Disorder - low-functioning”, and she constantly gives the impression that she has always behaved and looked as disabled as she does, and has always been non-verbal. That is entirely false . She has said on a number of occasions that she learned to communicate by teaching herself to type at the age 9. This is also clearly false.
What is dangerous about this woman is that she speaks vociferously against any treatment or therapy for our children, and gives false hope to parents that without intervention of any kind, their children with Autism will one day be able to communicate as well as she does. In her view, children with Autism need nothing more than acceptance and love from their parents.
Unfortunately, she has a very large following, and has many positive comments on her You tube message boards from parents and other readers interested in Autism. Any negative comments that do not support the cause are deleted. She is giving her readers a totally false impression, and has even influenced authors such as William Stillman , who believes that autism has a purpose and that it is a gift from God, and others who believe that Autism is ‘the next step in human evolution’. Stillman had this to say on the CNN thread. “Do not be deceived: wise and wonderful teachers, like Amanda, walk among us in disguise as those who appear to be severely impaired.”
I am not alone when I say that I would like something done about Amanda’s influence, particularly on parents of children with Autism. She has become the Autism Guru, and has set herself up as spokesperson for low-functioning individuals. Not having had Autism herself, she has no right to give them a voice, and preach the “celebrate autism” Neurodiversity propaganda. Parents who treat their children are accused of child abuse, and treatment or therapy, in their view, is tantamount to killing the autistic person.
Autism is a devastating disorder both for the child concerned and for the family, and early intervention is vital.
How can we get the real truth about Amanda Baggs to surface, when every day more and more people get to hear about her, and are being influenced by her messages?
Just like this. I know it seems slow, but keep talking, and keep typing. You’ve now educated probably more than 100 people about what she’s doing - this thread has nearly 2000 views (although some of those are the same users viewing it more than once.) It might not feel like much, but it’s a start. Keep fighting ignorance; it’s a battle that never ends.
Thank you for clear and cited information. It does not appear that you have an unfounded vendetta against this woman. You have clear evidence and rational reasons to be upset with her. I can’t speak for anyone else, but you’ve absolutely cleared any doubt that I had that this woman is a fraud, and the next time someone mentions her and I see it, I, too, will fight the ignorance. So just by posting here, you’ve increased not only the visibility of your message, but you’ve got at least one other person who will try to do the same.
Consider joining as a member when your trial runs out. We love to do this stuff, and with your calm demeanor, your good use of grammar and spelling, and above all, your ease and skill with citations (we love our cites around here!), you’ll fit right in. Welcome!
I am proprietor of the website http://www.neurodiversity.com and a personal friend of Amanda Baggs. I can vouch for the fact that she is autistic, regardless of whether she conforms to anyone’s preconceptions about autism. So can Sanjay Gupta; CNN staffers did their homework and confirmed her diagnostic status before featuring her on House Call.
ConcernedParent’s and ForeSam’s conclusions about my friend are presumptuous, distorted, inaccurate and downright vicious. (Disclosure: I have been a frequent target of ForeSam’s vilifications, thanks in large part to publishing an essay, Warriors, Diplomats & Bandwagon Jumpers [at http://neurodiversity.com/weblog/article/13/], in which I described his public statements about autism and vaccines as “extremist.”) WhyNot, your hasty, newfound conviction that “this woman is a fraud” is poorly informed. Should we suspect the worst of anyone who challenges our assumptions about disability, or who behaves in a different manner when they are in their twenties than when they were in their teens? I doubt that anyone would appreciate having their own or their child’s integrity questioned on the basis of personally disclosive, immoderate, confused or grandiose statements made in adolescence. It’s hard enough being a teenager and trying to figure out where and how’ll you’ll fit in this world; even more so when you’ve got serious existing and emerging wiring issues, and a trail of diagnoses issued by various and sundry professionals with various and sundry educational backgrounds, most of whom are probably just as confused about you as you are.
DSeid, while I take issue with your arm’s length rediagnosis of my friend, I agree with you that “there’s a lot of quackery out there,” and that “parents need to do the hard work knowing that they will not be making their child ‘normal’ but only limiting how disabled their child will be.”
samclem, I agree that generalizations about medical professionals are counterproductive to civilized discussion, and I’m glad to see you put a gentle stop to them. People often forget that many doctors, medical researchers and public health workers go into those professions out of a desire to reduce human suffering. Also counterproductive to civilized discussion are generalizations about autistic people, generalizations about parents of autistic people, and generalizations about those for whom the word “neurodiversity” has a positive connotation. Contrary to ConcernedParent’s assertion, not all “neurodiversity propagandists” believe that parents who provide their autistic children with appropriate medical care and education are guilty of “child abuse.” Certainly, autistic people of all ages deserve parental love and acceptance. They also deserve appropriate education, appropriate medical care, appropriate tools for mobility and communication, and appropriate social supports at all stages of development. There is plenty of room for principled debate on what constitutes “appropriate” intervention in any of these areas.
Please forgive my intrusion on your conversation; I simply have to stand up for my friend. I welcome readers of this thread to visit my website, http://www.neurodiversity.com, for my opinions – i.e., one woman’s opinions – on matters of current significance to those whose lives are touched by autism.
Will you address ConcernedParent’s claims that Amanda was a gifted student with normal social relationships until the time she was twenty? That certainly seems to contradict the claims made in the photo essay. Did she attend the schools mentioned? Did she skip second grade? Was she only diagnosed after extreme drug experiences?
These are the kind of thing that are verifiable, and would lend support to an argument.
This is a very important assertion. Our knowledge of autism is still evolving – indeed, the term has already been expanded to include individuals (Asperger’s Syndrome) who, until a few years ago, would NOT have been considered autistic at all. I expect the definition to grow even wider as more evidence about the syndrome is uncovered.
About Amanda Baggs…I’ve browsed through some of her writings and I don’t get the feeling she’s a fraud, she clearly believes in herself. (She does come off as a bit of a drama queen, though…no offense intended.)
Thanks for the link, some good reading there.
No, I will not. I wrote about a friend, not an argument; a real human being who is dear to me. My friend has revealed quite enough about herself as it is. How much more personal information will you demand before giving her the benefit of your doubt?
Consider a scenario comparable to this one: How would you respond if someone asked you to provide a list of your friend’s sexual partners, and the dates of their relationships, in order to verify their claim to be the parent of a particular child?
That is quite convenient.
Not comparable.
On this message board,and in this forum, claims require evidence; extraordinary claims even more so. There are other fora more suited for anecdotes of a personal nature.
What’s so personal about when and where she went to college?
The two situations are not remotely similar. Sexual partners have nothing to do with the parentage of a particular child. Muteness, uncontrolled violence, lack of toilet training, inability to communicate other than by one finger typing (if that is the case,) random screaming, serial catatonia, and the various other symptoms (from childhood) mentioned on the website are completely inconsistent with skipping a grade, going to secondary education, and working with autistic children.
Ms. Seidel, this site is primarily devoted to fighting ignorance, and serious accusations have been leveled at Ms. Baggs. As the parent of an autistic child, I highly doubt much of what she claims, if not all of it.
If you are unwilling to support your post with anything except for “Stop picking on Amanda! It’s all true!” then your post wouldn’t seem to serve the purpose you hope for.
Just a thought.
PS- with speech and ABA, my high-functioning son has progressed to the point that he is no longer limited in any way by his autism. Pretty amazing stuff- like miraculous. YMMV, as always. Just my opinion and experience, purely anecdotal.
Kathleen, although I initially had faith in the truthfulness of the website and believed that your friend was autistic, I have to say I have my doubts now. You may not be familiar with how this board (and this forum, in particular) works. When posters here are presented with suspect information, they have a tendency to request “cites”–substantial proof or solid documentation of a claim. I don’t think Amanda’s claim is so plausible that we should just believe everything she says about herself and about what’s been done to her.
I think if Amanda were more apolitical in her writings or just presented herself as an advocate for brain damaged (or neuroatypical) people rather than the autistic, she wouldn’t be such a target. But when a person intentionally draws the limelight to herself, presenting herself as a spokesperson for an entire “movement”, vehemently castigating well-intentioned people, that person should expect criticism and skepticism as well as positive attention. I think it’s only fair that she and her advocates address the concerns that have been brought up, rather than simply ignoring them. Otherwise, you’re just preaching to the choir.
Welcome to our guests!
Ms. Seidel, I think that you will have to accept the fact that few critical thinkers will accept an extraordinary claim on the basis of your vouching for it or even the vetting of CNN and Dr. Gupta. My assessment as to her presentation of herself as having been a severely autistic child not ringing true stand.
But once again, the discussion as to her being “real” or a fake is really mostly a moot one to me. So what if she is a paranoid schizophrenic or “normal” even? As I said in previous post :
Now I think I can gather from your site these are not POVs that you embrace. You seem to provide a comprehensive clearinghouse of information. You most certainly do not seem to fight against raising money for research to understand the root causes of autistic conditions or to be railing against organizations that do. And I think that you will find few here who would endorse treating those with autism as freaks. Nor would those at The Autism Society of America or even CAN. Few of us here even would debate much with AHunter’s perspective as a functional adult with schizophrenia that he has a right to exist in his reality so long as he does not present a harm to others who share the majority perception of reality. But few of us would fail to believe that an adult who is unable to function independently is somehow a tragedy and something to avoid. (No, not as Ms. Baggs fears, by genocide, but by early identification and treatment aimed at reducing the severity of the disability.)
So to you, as a representive of “the neurodiversity movement”, I ask what the point is? And how do you see her site as serving the point? We can leave her actual status as something that we will have different conclusions about.
BTW, my assessment as to her presentation of herself stands despite having just checked my e-mail and having received a threatening e-mail from a lawyer who claims to represent Ms. Baggs.
I will not answer directly to Ms Bevington, and I will stand by my right to question the veracity of Ms. Baggs claims, but must say to you Ms. Seidel that this sort of tactic lends support to the claims made by other guests who have posted here.
For shame.