Thursday, August 23, 2007

Autism, Vaccination and Neurodiversity - A Timeline: Part 2

I've been waiting for over a week for a response from Nine.

Will Nine like other ND advocates duck for cover as soon as the tricky questions are asked, or is he or she still searching for answers?

At Sat Aug 11, 12:13:00 AM PDT, Nine said...

"Actually, anti-cure ideas and advocacy to move away from a disorder model of autism were around prior to 1999. Jim Sinclair's essay "Don't Mourn for Us" (url http://web.syr.edu/%7Ejisincla/dontmourn.htm) was written in 1993. Autism Network International was founded in 1992, and activities leading up to its founding date back to the late 1980s (url http://web.syr.edu/~jisincla/History_of_ANI.html). 1999 might have been the year that the term 'neurodiversity' was coined, but the movement to advocate away from the disorder view of autism has existed well before 1999."


At Tue Aug 14, 08:45:00 PM PDT, watson said...

Nine said...

"Actually, anti-cure ideas and advocacy to move away from a disorder model of autism were around prior to 1999. Jim Sinclair's essay "Don't Mourn for Us" (url http://web.syr.edu/%7Ejisincla/dontmourn.htm) was written in 1993.

Who does s/he mean by "Us"?

What strikes me about Jim Sinclair's website is that s/he discusses intersexuality in great detail and what growing up as an intersexed person was like for him/her but spends no time at all talking about his/her own experience as a child growing up with autism. The only hint that s/he might have had autism as a child is when s/he says that aside from her intersexuality s/he "had some severe developmental communication and other problems", which s/he doesn't dwell on. I find that curious.

Although s/he is often referred to as a person with Asperger's Syndrome, from what I have read, s/he had no formal autism diagnosis in 1988.

I get the impression from this article and others that as a child and as a teenager, s/he felt misunderstood, rejected and unloved, and that s/he is speaking primarily about him/herself as an intersexed person having undergone - against his/her will - several painful and useless treatments to remedy his/her physical 'difference'.

The problem with that, of course. is that his being born an intersexed person could not be changed, cured or treated, and parents of such a child have no choice but to accept their condition.

The bottom line is that Jim Sinclair did not have autism as a child, and he is not, and never will be, a parent trying to cope everyday with a severely autistic child.

Nine, Can you find another pre-1999 anti-cure article from an autism advocate other than Sinclair?

"Autism Network International was founded in 1992, and activities leading up to its founding date back to the late 1980s (url http://web.syr.edu/~jisincla/History_of_ANI.html). 1999 might have been the year that the term 'neurodiversity' was coined, but the movement to advocate away from the disorder view of autism has existed well before 1999.

I'm sure you'll correct me if I'm wrong here.

Donna Williams, Jim Sinclair and Kathy Lissner founded Autism Network International in 1992.

Donna Williams

Donna Williams was an emotionally deprived, abused and neglected child - "a disturbed child", who lived as three people - a male (Willie), a female (Carol), and herself (Donna)- for twenty-five years before her autism diagnosis. In 1990, in her mid-twenties and after gaining an honors degree in sociology, and writing her first book, she was described as "autistic" by Dr Laurie Bartak.

I have not been able to find out if Donna was ever actually given an autism diagnosis, although she described herself as a high-functioning autistic which, after the DSM_IV came out in 1994, would be the equivalent of Asperger's Syndrome. She did not have a diagnosis of autism of any kind when she wrote her book.

After it was published with the word "autistic" in the title, she was accused of fraud by people who knew her well. She has become an autism consultant, author of several books , script-writer, film maker, and she is a sought-after speaker at autism conferences all over the world.

Jim Sinclair

Jim Sinclair was born in 1965. S/he is referred to as a person with Asperger's Syndrome.

S/he has a B.A. in Psychology and graduate education in Developmental and Child Psychology, and a Masters degree in Rehabilitation Counselling. S/he is described as a dynamic and sought-after speaker at autism conferences.

I don't know when s/he was diagnosed with Aspergers, but growing up as an inter-sexed person, treated as a girl until s/he was twelve, and then as a boy, must have been exceptionally difficult.

Kathy Lissner

Kathy Lissner, born 1965, was raped and sexually abused as a young child. She gained a degree in Political Science in her twenties and she was officially diagnosed with Aspergers Syndrome in 1994, at the age of 28, - although some sites say that she was diagnosed in 2001, at the age of 36 - having referred to herself as an "autistic" person, and having spoken as "an autistic", on behalf of "autistics", since 1988.

The ARI was founded by three highly-intelligent, high-functioning people with traumatic pasts who met in 1992 while Donna Williams was promoting her first book 'Nobody Nowhere: Autobiography of an Autistic Girl' at autism conferences. All are writers and all became self-appointed autism advocates.

I understand they were joined by Wendy Lawson.

Wendy Lawson was diagnosed, also, curiously, by Dr Laurie Bartak, with an "Autism Spectrum Disorder" in 1994, at the age of 42, after 24 years as a schizophrenic. She has five university degrees. She has written many books and is a qualified counsellor, social worker and psychologist. She was married with several children, and now lives with her lesbian partner.

Dr Laurie Bartak who diagnosed both Donna Williams and Wendy Lawson has said that abused and emotionally deprived children show autistic-like behaviours, and that these disappear entirely when the children are moved to more supportive and loving environments.

Dr Michael Rutter found that Romanian orphans with autism "recovered with reasonable foster care in Britain".

Dr Bartak, Senior Lecturer of Education at Monash University in Victoria, and one of Australia’s best-known authorities on autism with 40-plus years in the field, has said that environmental factors play a part in the development of some autism. Both he and Michael Rutter know that some children with autistic symptoms recover completely when their environment is changed.

Looking at these advocates, do you think that their autistic symptoms could have stemmed from their early traumatic lives and turbulent pasts?

Jim Sinclair, Donna Williams, Kathy Lissner, Wendy Lawson and others may very well have talked amongst themselves and decided to promote greater awareness and understanding of autism, and acceptance of people with autism by the community, but it was only after a link with vaccines had been made that any idea of acceptance of the disorder itself became known to parents of children with autism.

As far as I know, Kathy Grant and Wendy Lawson have not spoken against treatment. Thomas McKean certainly hasn't. Donna Williams herself uses diet and biomed. And even Jim Sinclair has said that s/he is not against intervention for behaviours that "intrude on other people's boundaries".

Although it is quite true that Sinclair wrote "Don't Mourn for Us" in 1993, the article reached my mailbox in 1999. There's that pivotal year, again. That's apparently when it was widely circulated around parent-run autism support groups and e-lists. Parents of children with regressive-autism after vaccination were outraged. They were indeed mourning for a child that they had lost, and they were searching for a cure.

If a child is born with a physical malformation, born with brain damage or born with a genetic disorder which interferes with normal brain development, one can understand why advocates who themselves were born with a physical difference would plead for acceptance, particularly after they'd endured several unsuccessful operations designed to remedy their difference.

However when a normally-developing child is brain-injured in an accident or after an encephalitis, or by a vaccine-induced encephalopthy causing organic brain damage, and they develop symptoms of brain-injury, parents do mourn for the child they have lost and desperately want to put things right.

Many parents in the 80s and 90s were mourning. They knew what had happened to their children, and they wanted to recover the children they'd lost.

In 2002, the first World Autism Congress gathered in Melbourne, Australia. and was attended by 1500 scientists, doctors, autism case workers and parents, "all absorbed in finding causes and treatments for the mystery disorder".

Both Donna Williams and Wendy Lawson were speakers, along with Temple Grandin. The first two we gather were described as "autistic" by Dr Laurie Bartak - at the ages of 26 and 46 respectively. Grandin, on the other hand, was diagnosed with autism in very early childhood. Adults with Autism Spectrum Disorders also participated in online chat room discussions.

Why do you think that the very first World Autism Congress was held in 2002?

Why do you think Dr Laurie Bartak "found himself hosing down spot-fires threatening to engulf some of his most eminent guests"?

Why do you think sparks were flying?

And, do you think that the parents attending that meeting had speech-delayed toddlers or quirky children?

21 comments:

Anonymous said...

Sorry I am anon, I don't have the new google account and blogger is not liking the other one...anyway. I have a daughter with Asperger's, so I have been reading a lot of online stuff. Your post about DW (the link to the radio show particularly) sent me over the edge. These people who were normal and outgoing in college and getting many degrees and "suddenly" autistic later in life??Including Amanda Baggs, her story is just not autism. No way. You don't go to Simon's Rock and party out and then suddenly be flapping with glee with your friends on you tube and decide you dont like eye contact. My daughter would never write such a self-reflective blog. She might; however, enjoy very much a bus schedule blog, that's about it. My daughter is in an autism group. None of these kids will be popular, outgoing, blogging all the time college students, or whatever. They bear no resemblance to these so-called 'famous auties' out there (If you really are autistic, dear reader, I do beg your pardon). My main issue is with the people who suddenly decide they are autistic. Maybe mental illnesses are not so glamourous? Is that it? Anyway, it is bad for the autistic community that these people think they can write books and represent the autistic world. Read Daniel Tammet's book. He is bona fide. These other people with their philosophy degrees and psychology-studying people certainly do not fit the people I know, who like math and trains and are certainly not blogging constantly about themselves and their views and takes and just spewing endless spew about their perceptions. So John, since I dont know so much and I like to read books, please do keep us, the uninformed public, from buying these fraudulent books. I was snowed by Amanda Baggs... until I read her blog and more about her then I was like, what? Who is this person hijacking autism? So, yes, I'd love a fraud-author list if anyone has one.

Fore Sam said...

I'll be talking more about fraud very soon. The more we look at Neurodiversity, the more evident the fraud becomes. They're very good liars though, so it's tough for the average person to see through it until they learn a lot about autism.

Anonymous said...

Just like the first Anon, my problem with people like Amanda Baggs is her abilty to see herself, to talk about her feelings, to simply understand, which is so far beyond the ability of anyone with Asperger's and certainly beyond the abily of someone functioning on the level she claims to function. No one with Asperger, just like the first poster said, has the abilty for self reflection like the Amanda Baggs's of this world. She claims to know the origin of every feeling, worry, ache, pain, past and present trauma she ever had. All these things are beyond those with Asperger's. I guess what she and all the other carreer public speakers are doing is trying to get people to believe that people with ASDs can do these things if only they were better understood. The problem is, if they can do these things, then they do not have an ASD. Simple as that.

Anonymous said...

Most of what you see "written" by
Baggs, at least "originated" in the mind of Laura Tisoncik. Then they both polish it. Teamwork - for a higher cause, doncha know?

Donna said...

Hi John,

I included your comments on my you tube clip until you became a flamer.
I don't accept flaming.

You will need to correct some factual errors on your blog in order to avoid being sued for libel.

I have NEVER had a diagnosis of Multiple Personality Disorder. An unqualified sociology professor gave this OPINION of me in 1994 based on his memories of me in obligatory 30 minute private 1-1 office appointments as my thesis supervisor to discuss my thesis (10 in all).

This was the complete 1-1 level of personal interaction with this person. So please be careful what you deem a professional diagnosis. Not to mention that you are crediting someone whose office behaviour I complained about to the dean. Anyone who read what I wrote of that supervisor in Nobody Nowhere can read between the lines what went on in that office. It is certainly not a means of 'knowing' someone as you are portraying it. Ask yourself why a sociology professor would have got MPD like behaviour from someone with a long term background of abuse when obliging them to have 1-1 in their office in order to pass the course.
It ain't rocket science John.

Although some people will always prefer a conspiracy theory. It's a diverse world, so be it.

As for formal diagnosis, I was assessed at age 2 as psychotic in 1965 at a private hospital called St Elmo's in Brunswick, Victoria.
This was after admission for appearing deaf, no pain response, bruising when touched (leukemia was queried) and coughing up blood. The finding was the coughing up blood was a compulsive behaviour resulting from tensing my stomach muscles and coughing against the force continuously (today this would have been dx'd as a tourette's tic). My parents were reassured I was not deaf and didn't have leukemia but was psychotic.

In late childhood I read on the teacher's student roll next to my name "Donna Williams is a disturbed child". This was in 1974, I was 11. This was my 2nd diagnosis and based on being studied by the Psych and Guidance service to the school.

I was diagnosed with autism in my 20s in 1991, a year after writing my 1st of 9 books and also with Language Processing Disorder and Scotopic Sensitivity Syndrome (visual perceptual disorder).

I was also diagnosed with and treated for 2 primary immune deficiencies (lack of white cells and NO secretory IgA), multiple food and chemical allergies, salicylate and phenol intollerance, B12 deficiency, 5 times the high level of inflammatory cytokines, dairy allergy, gluten intollerance and severe magnesium deficiency. I was first put on zinc, C and multivitamin-minerals age 9 in 1962 and the result was that I moved from stored language to functional speech in 2 years (previously fitted the criteria for Semantic Pragmatic Language Disorder).

Whilst I was abused and neglected since infancy, ASD runs on both sides of my father's family with another person dx'd with autism and several with Aspergers as well as others with dyslexia, ADHD and bipolar. On my mother's side are diagnoses of agoraphobia, bipolar, depression and substance abuse is rife with 6 suicides. So these are hardly neurotypical people.

Children with autism can be born to people with equal challenges and I am proud of the innovations of my parents as uneducated people in the 1960s and 70s in a time there were few books, films, services, groups.

Yes, my IQ was tested as under 70 in my 20s after I had a university degree. But this was made up of scores in the genius range weighed down by severe visual processing and language processing challenges. Not all people with IQ under 70 are 'dull' in intelligence. This score was not 'global'. My capacity for mapping systems, patterns and rote are exceptional and higher than most non-autistic people. This does not erase the severity of the challenges.

I would like to neatly fit a box of HFA or Asperger's, but fact is I don't. I do function today in the HFA range, but this is not the girl who peed all over her room at age 11, its not the kid who had 10% receptive language at age 9, its not the kid who had bites all over her arms at age 6 from her own teeth, its not the kid who had no sense of pain and was trying to cough up her own lungs at age 2. Fact is, many people with autism WONT make my journey, but I did.

If some supervisor gets uncomfortable enough about what I might say based on the small bit I did say about his office behaviour to want to pursue me for years, that doesn't erase my journey. And if he can dig up someone who once had a coffee with me and someone who shared a 1 hr class with me among 60 students (this was 'Vanessa' from Somebody Somewhere in fact so people can read to see her own motivations for inclusion), then so be it.

Nor does my story validate or invalidate that of any other human being. Nor does it promise that all severely autistic children will or can make my journey. I have been through a lot of treatment, especially medical and I do not have a globally low intelligence even though my IQ was assessed as under 70 in adulthood. Intelligence is also emotional and that can't be assessed in an IQ test together with having an endless memory and savant range skills in systematising and rote learning, I have had many things on my side others with autism may not have.

Any time you choose to dialogue with me in a way that is not FLAMING, I will certainly consider that.

... Donna Williams *)
http://www.donnawilliams.net

Donna said...

And please also don't misquote Dr Bartak. He has over 40 years experience working with people with autism and is one of Australia's leading autism experts. He did not diagnose Wendy Lawson with autism. He diagnosed her with Asperger's. Having asked Wendy why she uses the word autistic to describe herself she told me this was on the basis of not having spoken till age 4. I explained this can also occur in non-autistic children. So Wendy is clear she has Asperger's and that was her diagnosis.

Temple was not diagnosed with autism in infancy. She was diagnosed as brain damaged at age 2. At that time she struggled to pronounce words, saying 'bah' instead of 'ball' (which would fit with Oral Dyspraxia). She had speech therapy from age 2 and by age 3 and a half was speaking. In childhood her mother completed a checklist for autism, finding Temple fitted the DSM. In adulthood Temple was assessed as having Asperger's.

Kathy Grant was diagnosed in the HFA range in late childhood. Her father is a brain surgeon and she had intensive early intervention from age 2. The sexual abuse you refer to happened to her in late childhood. Kathy has NEVER claimed to have been severely autistic.

Jim Sinclair didn't speak till age 12. He may have had Selective Mutism but says he hadn't worked out why to speak. Jim had a childhood diagnosis of emotional disturbance and at some point a diagnosis of autism.

None of these people have been treated for severe gut, immune or metabolic disorders though Wendy has recently been diagnosed with Coeliac.

I have met hundreds of autistic children and most in the 'severely autistic' group had symptoms of severe health issues, often with associated severe mood, anxiety and compulsive disorders and severe information processing problems with associated behavioural and communication challenges. I am quite clear that most of these people have severe challenges well beyond infancy and these persist until the health issues are addressed. I am also clear that people like Temple, Wendy, Jim and Kathy, whilst on the autistic spectrum, were not in this particular gut/immune/metabolic disorder group. Nevertheless, I have found all of them to be warm, straight forward people. In a world of nastiness, hatred and exploitation I think this is a nice relief.

... Donna Williams
http://www.donnawilliams.net

Donna said...

I never met Wendy Lawson until 2002.
I met Kathy Lissner and Jim Sinclair in 1992 when involved with the promotion of my second book, Somebody Somewhere. I went to meet Kathy as the only other verbal woman diagnosed with autism I'd heard of other than Temple (Temple's assistant sent a form letter). Jim was excited to meet a new person with autism and came over to meet me. The forming of ANI at that time had nothing to do with today's neurodiversity politics. We were simply seeking to connect up all people who had been formally diagnosed with autism as in those days the incidence was still thought to be 4 in 10,000 and Aspergers wasn't a diagnosis. To confuse the origins of ANI with todays neurodiversity movement is fallacious. The neurodiversity movement came along years after the founding of ANI and was begun by Jim and carried forward by many others, including Wendy Lawson.

So this should clarify your innacurate history.

My place in the neurodiversity politics has always been as a moderate who strongly supports treatment for gut, immune and metabolic disorders for the subgroup of people with AUTISM who share the same health issues I've dealt with. At the same time I respect ALL people with ASD who I find non-harmful regardless of their beliefs because the world has enough nasty people its good to respect those who are not.

.... Donna Williams
http://www.donnawilliams.net

watson said...

Anonymous said...

"I'd love a fraud-author list if anyone has one."

Anon, I think Temple Grandin is the only 'autistic' author I'd trust. She was diagnosed with autism in infancy. Unlike Sinclair and Williams, she has never been accused of fraud. And I don't think anyone could doubt that she is a bona fide autistic.

watson said...

Anon, There seems to be a lot of emphasis today on savant abilities, and what worries me is that 'autistic' is fast becoming synonymous with 'savant', or, at least, being 'more gifted' and 'more talented' than normal people.

There are parents celebrating autism today because although their children cannot relate normally to their families, they can do jigsaw puzzles at lightning speed with the picture face down, or recite the names of the presidents in order, forwards and backwards, or recite a 30 minute video perfectly, and this to many is cause for celebration because they see these phenomena as signs of giftedness - and many parents no doubt shun treatment of any kind because they believe that their child will one day turn out to be another Einstein. I find that very sad.

You mention Tammet. Only 10 percent of people with moderate to severe autism have extraordinary skills like Tammet, and some otherwise ordinary people have savant-like abilities.

What I find interesting about Tammet, is that he wasn't an autistic or a savant until after his brain was damaged by a grand mal seizure at the age of three.

A genius explains

"Savants have usually had some kind of brain damage. Whether it's an onset of dementia later in life, a blow to the head or, in the case of Daniel, an epileptic fit. And it's that brain damage which creates the savant."

And I would add that it's brain damage which creates autism.

Well, I'm not going to bother to re-write what I've just written, but I've just looked at health.wikia, and, according to the authors, all you need to be an autistic savant today is to be "an autistic" and have "extreme talent in a certain area of study" such as fast programming skills. You don't have to behave like Rainman, and be like Kim Peek because, according to them, Kim Peek is not autistic.

Well, that's news to me!

Fore Sam said...

Donna,
Thanks for taking the time to respond.
I hope you'll notice that this entry was not written by me. I apologize if your diagnosis may have been misrepresented. Perhaps stating that one doctor's opinion that you had MPD is not the same as a formal diagnosis would correct that.
On the other hand, if this guy has over 40 years working with autism, it shouldn't take him long to make a diagnosis. It took 3 pro's about half an hour to diagnose my son at age one. Since the standard for diagnosing autism is by age 3, I suspect it's slightly more complicated to diagnose someone in their 20's.
Maybe reading your books is where Amanda baggs got the idea to give herself MPD by becoming an elf.
I believe I left one comment on your Youtube thing, someone called me a F***** idiot, and you wrote a couple of responses that were later deleted. I was going to make a followup comment but it seemed pointless after I saw the deletions.
Anyhow, my point, as you can see in the post I did write about you, is that you are misrepresenting autism as being something that a child can somehow deal with. My daughter is afraid of my autistic son and stays far away from him, with good reason. He's much larger and his careless running and rocking wildly and flailing his arms might injure her. My other son wants to kill the doctors who poisoned Sam. Yes, he gets that from me. If it weren't for prison, they would all be dead now from my hands. At the same time, he's about at his breaking point from listening to screaming and watching the self-biting almost every day that can last up to two hours at a time. One night recently, he grabbed a knife out of a kitchen drawer and wanted to kill Sam with it. He's only 8.

There is no acceptance of this nightmare that Sam lives. There can be no friendship with a person like Sam. There is no way to tolerate his behavior and interact with him since he very seldom interacts with anyone or anything. There is nothing that society can do to allow him to fit in anywhere.

The doctors who told me to institutionalize him were right in a way. As he was, and mostly still is, he is not fit to fit in anywhere, in any way.

Like you, he's making some progress with vitamins and chelation. The day might come where he can fit in and act like a human being, not a wild, deranged animal. He's come a long way from appearing to be in a walking, vegetative state. Like you, he could not feel pain. He does now, thanks to the chelation that neuroinsanity claims does not work.

There are lots of frrauds around today Donna, diagnosing themselves as adults and claiming they don't want to be cured. Your misrepresentation of autism as a condition that can be dealt with on any level fits right in with their anti-cure insanity. People can deal with kids with Asperger's and HFA. Society has no answers that do a bit of good for kids with low functioning autism.

Use the proper terms and I may agree with a lot of what you have to say. Low functioning autistic kids don't need people misrepresenting their condition as being something that can be tolerated and dealt with. If you spent one day with my son, you would agree that it is a nightmare for him and everyone in the family.

watson said...

Donna, I am the author of the post. You have written 4 whole pages in Word so I'd like to address a few of the points you've made, one at a time.

Donna said....

"I have NEVER had a diagnosis of Multiple Personality Disorder. An unqualified sociology professor gave this OPINION of me in 1994 based on his memories of me in obligatory 30 minute private 1-1 office appointments as my thesis supervisor to discuss my thesis (10 in all)."

I don't think there is any doubt that you have had multiple personalities.

Amanda Baggs who should know, says you do. She says on her blog, "Donna Williams and some others have had personas they used in order to pass".

Your book Nobody Nowhere is listed under Healthy Multiplicity Titles at Astreas Bookstore.

Also, it is quite clear from your publishers that you had at least two different personas while you were growing up - Carol and Willie.

You also say on your website here that you lived your "first twenty-five years as three people- a male (Willie), a female (Carol) and me (Donna)."

And yet you claim you have never had a diagnosis of MPD or DID.

I'm quite willing to change the wording of my post, but it won't alter the fact that by your own words you lived for 25 years as three different people.

And to a layperson, and I daresay psychiatric professionals, that means you had Multiple Personality Disorder, whether it was formally diagnosed or not.

Anonymous said...

Watson,
I see what you mean about savant abilities and Tammet. When I referred to his book, actually I wasn't thinking of his accomplishments I was thinking of the way he depicted his childhood. He had a lot of troubles-- and I didn't think during reading that he was celebrating anything; on the contrary he was struggling with a lot.
Brook Trout, as for me I don't think the criteria are too wide-- as foresam said, you can't miss real autism I would think. And, of course, I've never met an autistic person who made up an elaborate life-story for herself, real or otherwise. Or one that blogs 16 hours a day. Or that is celebrating the condition she is in.

Anonymous said...

Watson, that link you gave to the review of Donna Williams book was interesting. I have never read her books and don't intend to, but...

what struck me was that the personality of Carol was able to go to school and speak and make friends and act normal, at least that is the impression the review gives. I do not understand this 'acting normal' bit. I've never yet met a person who was so totally screwed up who could even understand what normal is, let alone fake it, and that is wether the person had brain damage, autism, PTSD or anything else. How do these people with ASDs and God knows what else, manage to fake normal most of their lives? How do they do it?

I grew up with autistic like behaviours which were not autism but PTSD and no one ever thought I was normal. I could not have faked normal in a million years. I didn't know what normal was.

Also,

Donna Williams interviewed Amanda Baggs but does not mention her in her list of ASD adults who blog and write etc. What does Donna think about Amanda Baggs, I wonder?

Anonymous said...

I was also diagnosed with and treated for 2 primary immune deficiencies (lack of white cells and NO secretory IgA), multiple food and chemical allergies, salicylate and phenol intollerance, B12 deficiency, 5 times the high level of inflammatory cytokines, dairy allergy, gluten intollerance and severe magnesium deficiency.

Donna, I find this interesting. This is what many of us parents in the biomedical community are finding out about our own children. I find it interesting that zinc and magnesium helped recover your speech, since many have found that children with autism have low zinc to high copper ratios and are deficient in magnesium. Also, the gluten and dairy intolerance is significant.

I was wondering if you have pursued for yourself any of the biomedical treatments that are popular today. I am not just speaking of chelation, but I am wondering if you have pursued additional nutritional therapies such as gfcf diet, methylcobalamin B12 shots and some of the other high vitamin and mineral therapies and what you have observed?

Anonymous said...

I'm confused about something. One minute Donna did not speak until age 11, then she had a co-personality who acted normal at school. Donna, could you speak or not?

What is stored speech?

Joeker said...

1st anonymous: I've been an Aspie since I was born, and was first officially diagnosed 10 years ago. Before you go thinking I'm another "instant Aspie," that was when I was 8.

Anyways, I'm not a popular, outgoing person, but I still blog. That's the beauty of the internet, you don't have to be a people person to thrive here.

I take no offence about that comment, because I see it as a real problem. Free rides, status, whatever they get out of pretending. There are those who get a diagnosis and can suddenly no longer perform the job they've been doing for years.

I'm a real guy with Aspergers, and I'm planning on becoming a writer, so just to let you know, you can leave me off the list, since I'm not going to be representing Autism, as I'm an Aspie, and the two aren't the same.
In fact, my efforts in non-fiction will be mainly towards advocating against bullying. But that's neither here nor there, now is it?

Next anon: It's not all beyond, but it's certainly hard. In my opinion as an Aspie, sure, we can self reflect okay, but not to the extent that Baggs apparently can.

I kind of disagree on that last bit. I don't think that applies in all cases. I, for example, learned social cues. I know what to watch for, how to react to certain things. I've managed to reach a level where I can act as average and normal as your next teen, but the key there is "act." I still have AS, but I can appear to be perfectly normal. Why'd I do it? To fit in. No one wants to be an outcast.

Donna:

I think people should stick to their diagnosis. I'm not attacking you here, but to be brutally honest, no one with Aspergers should claim to be Autistic. They're not Autistic, they're on the Autism Spectrum. Big difference. It's just my opinion. The use of the blanket term "Autistic" for all those with ASDs is ridiculous. It muddies the waters and makes everyone under this blanket presumably both deserving of the respect alloted to the most disabled, and the rights along with it.

Donna, both you and I share a respect for those with ASDs. There's something then, that you should know, being who you are. Neurodiversity and pockets of like minded individuals feel that LFAs, due to how LFAs act, make those with ASDs look bad. They consider all LFAs to be inherently unintelligent, and other vile things. They maintain views that they are superior to NTs, and insult them.
It is doubly vile, since they are on the Spectrum themselves.

Anonymous said...

"Next anon: It's not all beyond, but it's certainly hard. In my opinion as an Aspie, sure, we can self reflect okay, but not to the extent that Baggs apparently can."

Joeker, I appreciate your honesty. I can tell you are a decent kid who wants to be upfront about your condition. I agree with you about the definitions of autistic versus asperger's. However, I do not want to minimalize how hard it is to live with aspies and to be an aspie. My aspie cannot self reflect at all. He is impaired in all the required areas for a diagnosis including the gross motor clumsiness, no sense of humour at all, perseveration, no ability at all to read facial expressions or body language, normal intelligence and yet he is considered high functioning and he is high functioning compared to other aspies I've met.

You sound as if on the emotional end of the scale you are much more able than he is.

So how the heck did Amanda Baggs with her abilities even get a dx of autism, assuming she ever got one. She functions better that the average aspie when it comes to her knowledge of herself.

Anonymous said...

From Donna Williams blog.

"I’m diagnosed with autism but many people have claimed me for the DID camp. Why not? I lived my first twenty-five years as three people- a male (Willie), a female (Carol) and me (Donna). There’s got to be more than a little possibility there. And certainly I wouldn’t be the first autistic multiple because I’ve already heard from a number of others on the autistic spectrum."



It certainly looks like she is saying she is MPD even if she was never officially diagnosed.

How can a person be autistic and multiple? Personally I have always been very sceptical of MPD.

Joeker said...

Anonymous, I'm not sure why I'm the way I am. I found out when my parents left me something to read on AS, which included criteria for it. I read it, and thought on it, and told my mom that I thought I had it. She told me I had been officially diagnosed a little while ago. from that point, I got a rough outline of what AS was, and started working on "fixing" it, in essence, learning how to be like I didn't have it.
I like to think that it's worked pretty well.

I'd say my development was compicated. There's parts I can identify as having been how I am now, but other parts aren't so clear.

I didn't undergo any specific form of treatment, just the discipline of school, and the struggles associated with it. I learned how to fit in, how to make small talk, how to control my stimming as best I can.
I guess I'll make points on that which I remember helped, or that I feel helped.

Self-reflection - Unsure... Perhaps(and this will sound terrible) it was the amount of pain I felt in elementary school. There was a lot of physical pain, maybe it got me aware of my body?

Gross Motor Clumsiness - There's a reason I don't slow-dance. I'm not exactly co-ordinated, I stumble if I don't pay enough attention to walking. I've started to play DDR, and it's helped me improve my gross motor skills, but I'm not someone to choose first on a ball team.

Perservation - I just started trying to make myself stop. Focuses can help, like having your hands in your pockets, a hat, or a watch, carrying a bag, backpack, or bookbag, something to stop yourself. I count steps in sequences of 2, 4, 8, or 16. Right foot is even, left is uneven. I know it's odd, so I try to avoid doing it.

Facial/Body Language - I guess experience can be the best teacher here. I learned how to tell, I watched TV, read books, and watching people interact.

The thing with the emotions... I don't display them well, but I've got 'em. I'm really happy when playing video games, and I forget to smile, so often people think I'm bored or not enjoying them. Your child might not show emotion because they don't care to, or for a personal reason.

I hope I've helped some. This is part of why I don't think I represent Aspies well, since I seem to be so... well, out of diagnosis.

Joeker said...

I guess one might say that I've "gotten better" or that I'm "cured."

I just learned to cope, learned to control myself, learned to act normal.

I tell you, I'm a lot better off now, simply with knowledge of my diagnosis, research of it, and experience living with it, finding what I do that is caused by Aspergers, and controlling myself.

Years ago, and before I knew my diagnosis, you'd not believe me the same person. People change.

Donna, were I you, I'd focus on your diagnosis in the present. Stop looking to the past for what you are now. A Butterfly is not know as a Caterpillar, if you'll forgive that flowery metaphor. Who you are now is not who you were as a child. Find a diagnosis that suits who you are, how you act, so on. I'm about ready to leave the Autism community over this folly, trying to fool tests to diagnose. Better that than be tied in with the community as it seems to be going these days.

I really wonder at the fact that Ms. Williams seems to be supportive of the groups that treat LFAs poorly, and exclude them. Why is she supportive of this if she has only pure or good intentions?

And where's her lawsuit?

polyrhythmia said...

I recall reading followups of some of Dr. Kanner's children, and many of them seemed to have a functioning level about like mine: not married, no relationships, underemployed, living with parent(s) as adults. What is really interesting to me is that almost all the blogs and writings by those claiming to be autistic are by females. But anyway, I did get some intervention when I was a teenager. Part of the therapy was to get me to be able to know what I was feeling inside and express it. But for the most part, the only feelings of which I am aware are anger, fear, and sadness, and the sadness really didn't show itself until I was past age 30. I had a notable speech delay, not talking until I was about four and a half years old. Do I really have autism or do I have Asperger's, or am I just emotionally disturbed? Maybe we ought to go back to the older understanding of autism, only considering children such as John's autistic, and call the rest emotionally disturbed and blame them for being that way. And how many emotionally disturbed children does it take to change that light bulb? Only one, but he (and mostly it is a he) has to really want to change...