Letter to The Guardian re autism as a “distressing illness”

May 27, 2010

in Letters, Personal

Published in the Guardian today here.

Sir,

I must take exception to your recent reference to autism as a “distressing illness” (Andrew Wakefield case highlights the importance of ethics in science, 24th May). I am autistic, and I am not ill, sick, or retarded – I merely think differently to other people, and subsequently find it harder to understand how other people think. All autistic spectrum disorders may be summed up thus to a greater or lesser extent. If others find that distressing, that is their problem, not mine. But I am not ill.

Yours faithfully,

Sarah McCulloch

Subscribe to SarahMcCulloch.com via Email! (or via RSS!)

Be Sociable, Share!

Related Posts:

{ 18 comments… read them below or add one }

Andrew Hickey May 27, 2010 at 4:06 pm

I do and don’t agree… I think unfortunately the idea of the ‘autistic spectrum’ causes more harm than good here. Asperger’s seems to me to be a handful of personality traits, genetically linked, some of which are mildly beneficial (ability to create links between otherwise unrelated things) and some of which are mildly detrimental (inability to pick up on social cues), along with (usually_ a few comorbid symptoms like sensory intolerances or dyspraxia. I’d say someone with Asperger’s is no more ‘ill’ than someone who’s left-handed or gay or red-headed.

However, having done work in the past with people with learning disabilities, I know that what’s referred to as ‘full-blown’ autism can be, in the extreme case, a severely debilitating illness which requires round-the-clock care. I think conflating the two under a single label (as is routinely done) as ‘autism’ or ‘being on the autism spectrum’ is as absurd as labelling, say, mild clumsiness and quadriplegia as ‘limb movement disorder’…

Reply

sarah May 27, 2010 at 10:30 pm

I’m not convinced by that. If you look at the work by Amanda Baggs for example, someone who is low-functioning autistic, requires round-the-clock care and cannot speak, it is obvious she does not regard herself as ill. Her Youtube video In My Own Language demonstrates that we have much in common – I understand her “native” language on a level that on speaking with them, it seems my neurotypical friends do not – yet I can also make a cup of tea. Similarly, Tito Mukhopadhyay is a severely autistic Indian boy whose mother essentially bullied him into learning to write: and what neurotypical scientists have discovered to their astonishment is that these flapping, silent, husks of human beings they write off as ill or retarded have thoughts, feelings and an ability to communicate them if only they are given the tools to do so. I spent four years locked away in a dyslexia school to teach me the same thing – there’s no difference between me and them, only a question of scale.

Reply

Andrew Hickey May 28, 2010 at 10:47 am

Very interesting – I’d not come across Ms Baggs before.

I hope you don’t think I was ‘writing [anybody] off’ with my own comment. I’m on the autism spectrum myself, and I certainly don’t regard what I have as an illness or disability, but I’d suggest that *to the extent it negatively impacts on someone’s life* it should be regarded as one, if only in order to get help in order to ameliorate that impact.

(In much the same way my wife, Holly (who you might know, as you both do DELGA stuff, though I found your blog through an unrelated search and didn’t realise that til later) is legally blind but doesn’t regard that as a disability – except for those few times when it does make her life more difficult).

I am *absolutely* not in favour of writing off a single other human being – having worked with people with learning disabilities I know that no matter what, fundamentally people are people – but I don’t consider thinking something an illness to be writing the person off either, IYSWIM.

I agree though insofar as we shouldn’t be looking for a ‘cure’ ( I certainly don’t see my own thought processes as needing a cure) but rather should be looking for ways to help ameliorate the negative effects for those who want to accept such amelioration. (We should also, and equally hard, be looking for ways to emulate the positive aspects for those non-autistic people who want those aspects too…)

Reply

Robert Court May 30, 2010 at 12:47 pm

It can be misleading to bunch us all together; but those of us who have learned to play nicely with neurotypical people have a duty to defend those who are unable to defend themselves from those (mainly in America) who use the media to pedal this as a tragic ‘disease’ and advocate developing screening tests so autistic babies can be aborted.
It can be extremely difficult to care for severely autistic children but that is the responsibility you take on when you bring a life into the world. And we should be concentrating our efforts on developing ways to enable better techniques for communication and supporting parents.

Personally I consider autisum a natural evolutionary step; like having big heads its a matter of finding the right level between benefit and disadvantage. My aspergers has given me a great advantage in science, technology and dealing with our beurocratic world. I may have some social problems but most of that has just been a matter of learning which helps me understand sociology better.

Perhaps if we just delt with learning difficulties as a normal accurance and made them feel less inferior we’d have less in the prison system.

Rant end.
BTW the atrocious spelling and grammar is dyslexia and mobile autocorrect not the aspergers.

Reply

autism facts February 15, 2011 at 9:22 pm

Uh, excuse me, but Amanda Baggs is not autistic. Never was. Is not autistic. Baggs is a very mentally sick person with drug induced autistic traits. ASK Amanda about her drug past. See the facts yourself. She took a lot of LSD and then, after scrambling her brain, got “autism.” OKAYYYYYYYYYYYYY sure. all rightly then….c’mon folks use critical thinking skills here. Check out Amanda’s background baby and figure it out. Woe, unreal how gullible some people are.

Reply

sarah February 15, 2011 at 11:43 pm

Hello,

thank you for your comment. I have indeed gone and checked out Amanda Baggs’ history, and I remain satisfied that she is autistic. It is rare, but not impossible, for someone to develop autism in their twenties, after having led a vibrant, interactive life, see the Wikipedia article on regressive autism here: http://en.wikipedia.org/wiki/Regressive_autism

Regarding allegations of alternative mental disorders, including schizophrenia, multiple personality disorder: neither schizophrenia, nor multiple personality disorder are exclusive to an autistic diagnosis. You can, and I know people that do, have various personality disorders AND autistic spectrum disorders. It makes their life hell, but it happens. Whether Amanda Baggs has any previous history of mental disorders is neither here nor there when it comes to whether she is autistic or not.

Regarding factitious disorder: I would suggest that it is pretty much impossible to pretend that you are autistic 24/7. Amanda Bagg’s website refers to having almost constant care supervision, and numerous physical ailments. Perhaps you can fake heartburn, and chronic headaches, but you can’t fake muscle spasms and autism, simultaneously, for years on end. I am autistic, and I can’t keep up pretending to be normal for very long – normal people can’t pretend to be autistic for very long either. It’s not a disorder, it’s a way of looking on the world that no amount of studying can make you fluent in, and it’s very obvious after a conversation with most people which category they fall into, let alone all the medical assessments Amanda has probably been through.

And regarding LSD: the idea that LSD can give you autism is absolutely nuts. End of. The idea that LSD can drive you permanently insane is unsubstantiated at best and simply untrue at worst. Taking a normal dose of LSD every day for three months? There are people who have taken much higher dose than that for years and come out fine – Ram Dass, Timothy Leary, Albert Hofmann, all engaged in prolonged heavy LSD use and all they have to show for it is illustrious careers and an mild obsession with psychedelic patterns. People who claim that LSD will melt your brain have almost certainly never taken it and definitely don’t know what they are talking about. Scientifically speaking, LSD is one of the safest substances on earth.

These allegations may have some kind of truth to them – Amanda Baggs may be schitzophrenic. She may have taken a fuckload of LSD. She may once have been able to talk. NONE of these allegations, even if fact, exclude the proposition that Amanda Baggs is autistic now.

Reply

Sheogorath July 2, 2014 at 3:56 am

You clearly didn’t see the part of the Wikipedia article you linked to where it says that the onset of regessive Autism is between fifteen and thirty months of age. You mustn’t have seen the diagnostic criteria of Autism in the DSM-IV-TR either, where it says that onset is before the age of three years.

Reply

sarah July 16, 2014 at 2:49 am

“typically” between fifteen and thirty months of age. I saw a documentary on autistic people once where a boy started regressing well after that and people had no idea why. Autism has only been a studied thing for fifty years, don’t forget, and prevalence is increasing dramatically as people come to understand it better. I wouldn’t be surprised if there are a few individuals who experience a regression of functioning in adulthood, because why not? We have nothing to compare it to right now.

Reply

Sheogorath July 2, 2014 at 3:51 am

@ autism facts: Actually, Amelia née Amanda Baggs does not have ‘drug induced autistic traits’, she suffers from factitious disorder inflincted on self. This is clear if you look at her blog, in which she details having been successfully diagnosed with and treated for a number of physical conditions in an unusually short period of time. I will agree that you’re not autistic if it develops after age three, not PDD-NOS if it develops after age four, and not CDD if it develops after age ten, however.

Reply

sarah July 16, 2014 at 3:07 am

I’m sorry, but you can’t fake gastroperasis, you cannot, no matter how hard you try, “vomit up undigested food from three days ago” – see her health latest post: http://ballastexistenz.wordpress.com/2014/05/15/fat-people-and-feeding-tubes/

Amanda Baggs is on 24/7 supervision and lives off disability benefits. She doesn’t have access to the kinds of materials you would need to induce the kinds of physical symptoms she’s describing if she were motivated by factitious disorder. She’s managed to convince the American state to pay for a feeding tube, which is extremely difficult. And she’s also not pretending that she was once able to speak, play violin etc., it’s in her About Page: http://ballastexistenz.wordpress.com/about-2/

Reply

Sheogorath September 15, 2016 at 9:21 pm

However, it is possible to sneak a chocolate bar and an emetic, then claim that what comes up was eaten three days previously. I would be more inclined to believe Ms. Baggs if she had ever thrown up fluids drunk the previous evening, as I have.

Reply

Sheogorath May 31, 2017 at 7:38 pm

Additionally, gastroparesis doesn’t occur only with autism, and it is possible to fake not having abilities that one had in the past.

Reply

autism facts April 15, 2011 at 10:58 am

OMG you are so GULLIBLE. Amanda BAGGS IS A FRAUD. Here’s the proof: check out her picture when she wasn’t autistic and then after when she is pretending. This chick is beyond nuts. http://a.imagehost.org/0640/aaa.jpg (Amanda when she wasn’t pretending to be autistic)

autismfraud.blogspot.com/2009/12/amanda-baggs… (Amanda after she blew her mind on drugs and pretends to be autistic and fools media)

http://autismfraud.blogspot.com/2009/12/amanda-baggs-controversy.html
If you can see that and still think this crazy chick is really autistic than you must also be nuts. And you know what, I don’t think you are autistic. I think you are another mentally ill person who is hijacking the autism label.

Reply

sarah April 15, 2011 at 11:15 am

Yes, I have seen that image, and yes, I have read that website. I don’t think you read any of what I wrote previously to you, but the pertinent part is this:

“it is pretty much impossible to pretend that you are autistic 24/7. Amanda Bagg’s website refers to having almost constant care supervision, and numerous physical ailments. Perhaps you can fake heartburn, and chronic headaches, but you can’t fake muscle spasms and autism, simultaneously, for years on end. I am autistic, and I can’t keep up pretending to be normal for very long – normal people can’t pretend to be autistic for very long either. It’s not a disorder, it’s a way of looking on the world that no amount of studying can make you fluent in, and it’s very obvious after a conversation with most people which category they fall into, let alone all the medical assessments Amanda has probably been through. ”

Amanda Bagg’s doctor would have to be exceptionally stupid to not notice that she was faking so many symptoms whilst being autistic, for years. Is it possible for Amanda Baggs to have spent years living as an low functioning autistic with numerous co-morbid illnesses? Perhaps, with a great deal of research, commitment, and luck. It is in any way likely? No.

Whether you believe *I* am autistic or not is largely irrelevant to me. I have the educational psychologist reports, the background of struggling to fit into a world that thinks differently to me, and the feeling of totally affinity and mutual understanding with other autistic people to recognise that being autistic is part of who I am. My autism label exists only to help me to relate and explain myself to others, not as some sort of award or exclusive members’ club. If you don’t believe me, that’s fine. If you want to tell me I’m mentally ill, that’s fine. You’re an anonymous poster on the internet who seems to have some kind of irrational and extreme hatred of someone you’ve never met, infuriated that others don’t agree with you but who doesn’t even have the courage of your convictions to submit a valid email address. Why would I place much store by what you think?

Reply

Henry January 19, 2012 at 8:41 am

Amanda Baggs, the woman who many think suffers from Dissociative Personality Disorder, really has something even more interesting, which is psychogenic autism, possibly one of her personalities. It is also possible this is a factitious disorder, as she is reported to have ‘studied” other severely autistic cases in order to adopt mannerisms…Very interesting case. You Tube video: “autism epidemic out of control” and “autism spectrum seems out of control” go into this subject a tad…this is definately something on the horizon. A new phenomenon, sparked by the autism explosion and creating mass hyteria and psychogenic factors within unstable minds to adopt such a diagnosis, as they feel this will bring them attention and nurturing they so deeply need, due to often traumatic upbringings (ie…Donna Williams, a most interesting case as well). The trouble is, when these psychogenic autism cases are featured on CNN (as in case of amanda baags) then you have a case of avoidance, where the media that once promoted or featured such a person, is now unwilling to realize or accept that this was all a fraud, or fabrication of such. This is not helpful for neither the patient or the community at large. People DO NOT become autistic in their twenties. Ask any psychiatrist who knows anything about autism. For petes sakes people wake up this is an outrage. Amanda Baggs is not autistic and the time has come to set the record straight, if you don’t get sued by her lawyer first for trying….but don’t worry, the truth will come out. This hoax has got to be exposed.

Reply

sarah January 19, 2012 at 12:59 pm

Psychogenic autism is a theory that is currently totally unsupported and in my opinion as an autistic person, is utterly insane: http://www.awares.org/static_docs/about_autism.asp?docSection=4 If parenting were a factor, the current rate of the liklihood of siblings having autism would be ten times what it is now, which is 3%. That 3% demonstrates that there is a genetic link – lower, and it would be truly random – higher, and maybe it would be environmental.

There also is no autism epidemic. Psychology and psychiatry as sciences are only a hundred years old and they are still developing what it means to have a “disorder”. When autism was first defined, it was by studying a bunch of autistic children who mute and too low functioning to meaningfully interact with their surroundings. You basically had to be a vegetable to be autistic. Then when Hans Asperger started working with socially awkward and obsessive children, he realised their conditions were linked. The number of autistic children multiplied overnight. When psychology and Special Educational Needs started to get into education, and people became aware of what autism looked like, there was another increase.

The increase is diagnoses is due to better reporting and greater awareness of what autism looks like. It is not due to vaccinations, non-organic food, or poor parenting. People have pointed me to the Amish as an example of people who do none of these things and have less autism. This is not true, the Amish has less REPORTED autism. A society which does not use state apparatus or mental health services, which primarily provide care in the family and live inside a rigid rules-based society where you know exactly what is expected of you at all times, is obviously going to produce fewer autism cases for government statistics to collate. There is no evidence that they just have less autism.

The new DSM V definition, while much clearer and simpler, is also much less specific, and you will see another massive increase in the number of autistic children in about five years, when the psychiatric establishment integrates the work into practice. This is a GOOD THING, because it means that hundreds of thousands of autistic children will receive the treatment and support that they need to get through school and life.

Finally, for the benefit of all the autism-vaccine conspiracy theorists out there, I have only this to say – autism is a condition which makes it hard to socially interact, but not to cease enjoying life. Just because someone is unable to speak does not mean that they are not happy and contented with their life. Even if there was an established scientific link between vaccines and autism (and there are not, and the one doctor who ever suggested it was fired from numerous jobs for dishonesty and has now been struck off and will never been working as a doctor again). The reason we have vaccines is to protect from diseases that kill – the WHO estimates that more than 1.7 million lives have been saved since the introduction of systematic childhood vaccinations. When I become a parent, I will be vaccinating my children, and I would vaccinate my children even if the chances of them being autistic are 50-50 as a result. It is SO MUCH MORE important that my child never be at risk of measles, mumps and rubella, than whether they can achieve everything that I want them to.

I would rather have a happy, drooling, incommunicado child who spends every day playing computer games and doesn’t recognise me, than a dead child. I think any parent who thinks otherwise should take a good look at themselves in the mirror.

Reply

Sheogorath July 2, 2014 at 4:02 am

@ Sarah: The term ‘psychogenic autism’ no longer refers to the bulls### diagnosis of ‘parentally induced autism’. It instead refers to a conversion disorder that, unlike other conversion disorders, is not a somatisation disorder, but is actually a factitious disorder.

Reply

goinday.com May 13, 2013 at 11:10 pm

Hello! I just would like to give you a huge thumbs up for the great info you have
right here on this post. I will be returning to your web
site for more soon.

Reply

Cancel reply

Leave a Comment

{ 5 trackbacks }

Previous post:

Next post: