Wednesday, June 17, 2009

Autism Severity

The DSM V committees drafting revisions to the manual are considering distinguishing between autism disorders based on severity or level of functioning. Some autism "self" advocates have long complained about distinguishing between functioning levels of autism disorders based on functioning labels - HFA, high functioning autism, or LFA, low functioning autism. Some object to the division of autism disorders according to severity.

The DSM-IV already implicitly recognizes these differences by specifying with respect to Aspergers Disorder that:

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

Language, cognitive development, age-appropriate self-help skills, adaptive behavior (other than in social interaction and childhood curiosity about the environment are all basic elements of functioning in the "environment" .... in the real world. By definition persons with Aspergers Disorder diagnoses do not lack these important elements of real life functioning ability. The criteria for Autistic Disorder by contrast is based in part on the presence of some or all of these components of real life functioning. The persons who suffer from Autistic Disorder are by definition more severely affected by autism deficits than persons with Aspergers Disorder.

My son Conor is severely autistic. That is a fact of life with which we have to deal every minute of every day. He does not possess the communication skills or understanding of the world displayed by Michelle Dawson, Amanda Baggs or Ari Ne'eman. These people can communicate with the world and demonstrate intellectual skills and understanding of the world far beyond what can be imagined for my son. It is silly, just plain silly, and nothing more than that, to pretend that there are not significant differences in functioning levels and understanding between these three examples of high functioning autistic persons who have spent much time in front of television cameras articulating their views of autism disorders and the world and my 13 year old son who reads Dr. Seuss and can not, for his own safety, be left unattended.

As I understand from the Internet Ms Baggs was either at, or about to enter, a college for gifted youth at a similar age. Ms Dawson is a person who, in addition to being an excellent letter carrier in the very challenging world of Canada Post, was able to become an autism researcher, make representation to the Supreme Court of Canada (where she opposed government provision of ABA treatment to autistic children) and to a Canadian Senate committee examining autism treatment and funding issues. Ari Ne'eman is the head of an organization based in Washington DC who regularly appears before cameras, and meets with political and public bodies, declaring on behalf of all autistic persons, including presumably my son and other autistic persons like Jake Crosby and Jonathan Mitchell, that "they", autistics, do not want to be cured.

As a parent of a much more severely affected son with autistic disorder I am tired of the silly attempts to deny the obvious differences between those who can function well like Dawson and Ne'eman and those like my son who require 24 hour supervision. I have visited adult autistic persons living in psychiatric facilities in New Brunswick who can not function in the real world AT ALL let alone make representations to judicial, political and legal institutions or engage in autism research or advocacy.

My son can not speak to the world. But Ari Ne'eman, Amanda Baggs and Michelle Dawson do not speak for him. They do not share his realities. They are not affected by autistic disorder as he is and they show no real awareness of the very real differences between his reality and theirs in their sweeping generalizations about autism and what "autistics" want.

The DSM V committee attempt to distinguish between levels of autism severity or functioning is a step in the right direction. Look for a determined effort from Mr Ne'eman, Ms Baggs and Ms Dawson, and their followers, to oppose that direction. After all, if the obvious differences between high functioning persons with autism and those, like my son, who do not enjoy their gifts, are expressly acknowledged, the self appointed "self" advocates ability to speak on behalf of those much less fortunate autistic persons would be seriously diminished in the eyes of the public and more importantly in the eyes of reporters from the CBC, CNN, the New Yorker Magazine and Newsweek who cater to their wishes.

Focusing on differences in autism severity would, however, bring needed attention to the challenges faced by the severely autistic some of who currently live out their lives in institutions. A couple of years ago a middle aged autistic woman in New York was regularly abused by staff but could not communicate with the world to tell of the abuse. The matter came to light because of a conscientious staff member and video recordings which captured some of the abuse. The plight of that woman, her life challenges and realities, are much different that those of the high functioning autistic media stars who barely acknowledge the existence of the severely autistic and do not display any understanding of their realities.

If the DSM V does differentiate between autism disorders based on functioning levels, or severity levels, it will be a much needed step toward helping those severely autistic who can not speak for themselves. It will help to ensure that their needs, so different than those of media trotting, high functioning "self" advocates will be met. It will be a much needed step in the right direction.

It is time for the low functioning, severely autistic, to be acknowledged and their needs addressed.




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54 comments:

TannersDad said...

I agree to your points. My son is also low functioning. My fear is that the division of the Autism spectrum will also change the numbers. The mainstream might play up the fact that now autism is only ____. I think a new medical diagnosis with real therapies and treatments is needed. I also understand what those with HFA are fighting for. Dignity and respect. We honor that and they will help our children.

Marius Filip said...

If DSM-V will make a clear distinction between the two it will be a huge step.

Autism self-advocates will cannot claim representation of people having a different diagnosis.

The royal "we" will inherently narrow its scope.

Socrates said...

"those of the high functioning autistic media stars who barely acknowledge the existence of the severely autistic and do not display any understanding of their realities"

you clearly haven't watched the recent video Ari was in.

Judith U. said...

Thank you for this Harold.

Nestor Lopez-Duran said...

Hello Harold,

I think the chances that the DSM-V will include a dimensional (severity) system is pretty close to 100%. I've been to a large number of workshops and lectures given by members of several of the DSM-V working groups and it is very clear that DSM-V will include some type of dimensional/severity system. I think most people in the field, including myself, are extremely happy about such a change as the dimensional perspective much better reflect the reality of most of these disorders. Nestor.

farmwifetwo said...

I too don't believe they are the same - but I have one child on either end of the spectrum. I do appreciate that those with Asperger's and NLD have difficulties when they are younger and some may have difficulty as they are older if they are not taught to handle the OCD, anxiety, issues with transitions etc.

But, watching my eldest son's amazing growth in development and social skill/behavioural learning.... there's no similarity... not the slightest... to compare him to his younger bro on the other end of the spectrum.

Our current social skills we're working on at home are modesty and privacy. Dressing in our room or bathroom and not reading over someone's shoulder or picking up their things and reading them without permission.

It can all be taught and learned and has nothing to do with "curing".

I won't ever allow him to speak for his younger bro.... actually, truth is... he'll never be able to use his past diagnosis' of autism as an excuse of any kind in our home. Until he has children, I'll probably never tell him he had those diagnosis'... he has never been told. There's no reason to. He's not part of the IEP process until Gr 8 - my request - and then it'll be simply his LD's on his IEP - unless they can give me a really good reason why more should be added - like services. They offered to re-dx this past Sept to NLD but I need the OT. No autism dx (must have the word autism in it), no OT in Ontario. We're getting this toy http://www.keyboardinstructor.com/ for him starting in Sept... No dx, no OT, no equipment... just that simple. So it stays. After all the fight to deal with the system over the years... I'm not against using it's rules to get what I need for my children.

Those that do not require specific services related to their "autism", ie OT, SLP, psychiatrist, neurologist, in-home supports of any kind, IMO no longer qualify for a diagnosis of autism. Included in the diagnositic critera, a needs (supports) portion must also be included.

Christine said...

AMEN!!!!!!!

Roger Kulp said...

If this is the case,I think it would be a step in the right direction,but not a solution.

Just as it was`wrong to classify autism as schizophrenia,it is just as wrong to classify Asperger's as a type of autism.I think there is a great deal of confusion in most people's minds,as to just what HFA is as opposed to Asperger's.

High functioning autism is basically the same as autistic disorder,but without intellectual disability/MR.You still have the developmental delay,learning disabilities,low verbal IQ, sterotypy/self mutilation, cognitive problems,and even regression,but you are not intellectually disabled.This is the type of autism that I have.

This,is a very different condition,than the "autism" put forth by the Ari Ne'emans,and Deena Gassners of this world.There is a lot of ignorance among the public at large as to just what the different types of autism are.They use the ignorance to their advantage,to promote their false picture of what autism is.

Neurodiversity is the greatest single threat to any further progress in finding unknown causes of autism that we face today.It must be stopped.One of the best way to do this,is to deprive it of its reason to exist in its current state.Asperger's must be reclassified as a personality disorder,with no relation whatsoever to autism of any sort.

I would love to pick the brains of those in the APA,who are involved in the deciding process.I'm sure there are those there who see neurodiversity for the threat that it is,and are as frightened by what it could do as we are,but want to take this as low as possible.The after shocks of doing it all at once would be too much.Maybe by the time the DSM-VI comes out, Asperger's will no longer be an ASD.

Socrates said...

Are you a student of Chomsky?

Why can't a perfectly reasonable comment appear, indicating that Ari Ne'eman appeared in a video recently with two low functioning autistics to appeal for change in service provision across the spectrum.

Seriously, this isn't a debate - it propaganda.

Autism Reality NB said...

Socrates,

Calm down,

I was out of town today in Court. None of the comments including yours were posted until I returned late this afertnoon.

Socrates said...

Sorry, Mr Snarly came to visit after someone rearranged my Star Trek collection...

A Family said...

Wonderful post. I really appreciate this!

jonathan said...

I wonder what video Socrates is talking about? Is he talking about the Dan Moreno sponsored PSA no myths video? If that is the case, then it is not true there were two low functioning autistics. There was only one of four who apparently could not speak, the other three including Ari Ne'eman and two other extremely high functioning autistics. It had nothing to do with service provisions.

If there was some other video that Ari was in that he is talking about perhaps he could provide a link or some documentation.

Roger Kulp said...

The neurodiversity movement has clearly underestimated the level of animosity and outright hatred that they have stirred up,especially from other autistics,and their families.I honestly do not think they believed they would have met such opposition.

Like Johnathan Mitchell,I think having an autism diagnosis myself,gives me a little more freedom to call these people,and their agenda out as you see them.

Socrates said...
you clearly haven't watched the recent video Ari was in.


If you are talking about the poor nonverbal guy who was skulking around in the background,that's called tokenism,and I think it's disgraceful.It is yet another example how manipulative Aspergerians have been able to sucker lower functioning autistics into falling for this garbage.Yet another reason neuriodiversity activists ought to be ashamed of themselves.

If you are still here Socrates,let me ask you this.Can you give me one example of an antineurodiversity autistic who has had media coverage that can equal what has been given to neurodiversity activists?

I wonder if it is because many of the anti neurodiversity autistics are either too sick or disabled by what Kevin Leitch likes to call "co morbid conditions" to be as active as as Ari Ne'eman is.

Socrates said...

I'll come back later with some fuller details, but for starters:




Autistic self-advocate Katie Miller speaks at the IACC May 4, 2009



It's simply not true that we only speak for our[high functioning]selves.



Furthermore, this talk of HFA not really being as much of an issue as LFA, is blown out of the water by Jonathan's erm..., well by Jonathan

Autism Reality NB said...

Socrates

You either do not understand what I have said in my comment or you don't wish to acknowledge what I have said.

You can communicate by keyboard, draft complex sentences, paragraphs, essays. You can argue and otherwise demonstrate understanding of the world through your keyboard.

My son and many others lack basic communication ability and understanding of the world.

His, and their, realities are much different than yours because they lack those important elements of real world functioning.

You do not speak for my son, nor does Ari Ne'eman.

Please show some respect for others and other persons challenges.

Autism Reality NB said...

Nestor

Thanks for the feedback.

I hope you are right.

Socrates said...

If I say, as I frequently do to people in the UK, that's it's totally unacceptable for parents with children with high support needs, to have to send them to residential placements hundreds of miles away from their family homes, am I speaking for people like your son?

If so would you like me to STFU and not tell as many people as possible, what the realities of life are?

I don't have to be a HFA/LFA (or anywhere on the spectrum at all) to say that children [all children] have a right to family life, which isn't served by them being taken away from their families.

Socrates said...

btw, my father has two low-functioning cousins - I've seen the reality of LFA over the whole lifespan.

And I used to run a Special Needs project severely disabled children...

john said...

I couldnt agree more. Its not a one size fits all dx.

Oh, i presented you with an award, not sure if you do this kind of thing, but its a well deserved one. You can just ignore it if you want, but just wanted to put it out there.

Thank you for all the information and keeping to your pledge to conor, with that pledge, you have lots of families, not only your own.

http://specialneedsinmunchkinland.blogspot.com/

jonathan said...

I have seen this video of Katie Miller already. Ari Ne'eman is not in this video at all, let alone the two low functioning autistics that Socrates is referring to. I wonder if Socrates will in fact come back to produce evidence of this alleged video with Ari that I suspect I would know about if it were anywhere on the 'net. Or is this just another example of neurodiversity misrepresentation of the facts?

Autism Reality NB said...

Socrates

I have no idea what you are talking about at this time.

What I have said, and I will say it again, is the following:

1) There are different functioning or severity levels amongst persons with autism disorders.

2) The fact that Mr. Ne'eman has a high functioning autism disorder - Aspergers Disorder - does not entitle him, or give him special insight or expertise, to speak on behalf of those who have very little ability to function in the real world let alone wage a perpetual media campaign and run an organization.

Steve D said...

I think it is worth mentioning that Ari Ne'eman, as well any other individual in our western society, does not require anyone to cede to them the right to speak for anyone. Ari and ASAN's actions and words will stand or fall on their own accord, as will those of Harold Doherty, Jonathan Mitchell, and Steve D.
That Ari has Asperger's Syndrome neither argues for nor against his right or abilities to "speak for" anyone, though people like he and Jonathan can certainly bring more personal experience to bear on the topic than someone such as me and it is important to acknowledge that.
Harold has often taken the position that parents have the right to "speak for" their kids, and as far as I am concerned he is absolutely correct - this is a legal right as well as almost completely accepted from a cultural standpoint, and notwithstanding the existence of autism or any other factor.
I think the important concept here is that Ari's message, which is his by right to offer or withhold, is either going to resonate or fall flat with people. If we disagree, we can choose to ignore the message, or devote an equal amount of time and energy to directly countering the message and its resulting actions.

Autism Reality NB said...

Steve D

Obviously anyone can express their opinion on any subject ... on their own behalf. It gets trickier when one starts using the royal "we" as has been done by Ari Ne'eman and other high functioning autistic persons like Michelle Dawson, Amanda Baggs and Jim Sinclair and stating that "WE Autistics" do not want to be cured.

When that happens these individuals are misrepresenting their authority, the varied nature of autism disorders and the views of autistic persons and family members around the world.

Why in the name of HECK do Ari Ne'eman, Michelle Dawson and others have any right whatsoever to oppose efforts by parents to treat and cure their own children's autism disorders?

In the context of autism disorders a person with Asperger or HFA does not share the same realities and challenges as a severely autistic persons whose issues, challenges and needs are ignored and lost in the media glare focused on the Ari's and Michelle's.

If the public is led to believe that Ari Ne'eman is any way typical of all persons with autism disorders than those who in fact suffer from the severe impacts of autism disorders will pay the price for that gross misconception.

The consideration by the DSM V committees of a division of ASD's by severity jibes with common sense and may eliminate much tension if those who are more fortunate take the hint and stop trying. If it comes to pass it may allow attention to focus on the very real needs of the most severely challenged autistic children and adults.

Autism Reality NB said...

Socrates

I did not publish your last comment because it was off topic. The topic is autism severity. Although it includes the role of Ari Ne'eman it does so only in the context of his inability to speak on behalf of all persons with autism disorders. This section is not aimed at debating all of Ari Ne'eman's beliefs.

Socrates said...

Sorry H.,

Just wanted to express my belief that Ari has always advocated for rights across the spectrum.

But certainly, Ari's and my needs are substantially different from you and your son's.

But as for severity? Well, is suicide of high functioning autistics considered severe?

In the past 8 years have personally know two people who've killed themselves pretty much directly as a consequence of Asperger's Syndrome.

Prof. Digby Tantam has said he believes that Asperger's can be as disabling as schizophrenia.

Ari is fortunate to have been diagnosed early, had a very close and wealthy family to raise him and is doing very well for himself.

I'm not sure he, along with a lot of others, quite realise just how severe Aspergers can be.

I live not far from a specialist autism hospital, about 80% of it's patients are hfa, and most have been detained under the Mental Healh Act. Many have been in prison. Suicide attempts feature frequently in the patients' histories.

Interestingly, they cater for patients right across the spectrum, which include non-verbal people with very challenging behaviour.

The fact that they don't acknowledge a definite cut off between hfa/lfa is, I think, significant.

Steve D said...

Harold -
I disagree that the individuals you refer to are 'misrepresenting their authority'. As follows from my earlier statement, any authority ceded to them is due to their message being received and having people or entities willing to take action as a result. This is not disingenuous, it is legitimate and accepted.

As far as whether they 'have any right whatsoever to oppose efforts by parents to treat and cure their own children's autism disorders?',
I would disagree that they have the power to actually oppose this from happening. If their efforts eventually lead to a policy decision or other enforceable result, then that simply means their efforts brought about that result through legitimate system-based means that all of us have access to and can impact in the same way. Further, it is notable that though they may (or may not) oppose things you would specifically endorse, they also recommend many other things that you may (or may not) think are good ideas. Surely you are not taking the position that "anything goes" in terms of autism treatment? There is plenty of room for disagreement on this topic, but it is not accurate imply they can oppose treatment any more than you or I can endorse treatment.
I think it is also important to recognize that autistic people all over the spectrum have difficulties and challenges. I'm sure you would agree with me that any change in the DSM that reduces services and supports for people with, for example, Asperger's Syndrome, would be an undesirable outcome. Just as I would agree with your statement that 'it may allow attention to focus on the very real needs of the most severely challenged autistic children and adults.' In other words, if a different approach to classifying or understanding severity of challenges helps to personalize approaches to improving quality of life, I would see that as a good thing. On the other hand, if a reclassification pushes people out of reach of needed supports and services, that would be a very bad thing.

Autism Reality NB said...

Socrates

My son and some other persons with Autistic Disorder lack a basic understanding of the world they live in and lack a fundamental ability to communicate ... as in the example of the middle aged autistic woman in the New York residential facility who was abused and could not communicate her plight to others. These severe deficits color every moment of existence for the severely autistic.

Autism Reality NB said...

Steve D

I realize you disagree with my perspective to the point that you fail to acknowledge what is plain and obvious. Ari Ne'eman says WE don't want to be cured as though he were speaking for all persons with autism disorders including those much less fortunate than he.

Michelle Dawson intervened in the Supreme Court of Canada to OPPOSE TREATMENT for OTHER PEOPLE"S CHILDREN on the basis of her "perspective as an autistic".

These people are purporting to speak on behalf of people they have no right to speak for and some autistic adults have also said so ... and been vilified for it.

You are free to imbibe and repeat their rhetoric. I choose not to do so in caring for my son and in expressing my opinion.

Foresam said...

Harold,
Do you know the history of Frank Klein and how he trained all of these people to present this propaganda that is designed to prevent anyone from curing autism?

Frank did a wonderful job training these agents to present these deranged arguments as though they actually believe them. That's the key here, understanding that all of this nonsense is by design.

john said...

well, lets face it, if we all get jenny Mccarthy to raise our kids, then they wouldn't even have autism anymore.

I must be such a bad bad parent as my child will never be like katie smith or Ari Ne'emans.

socrates,

as a person with autism, how did you even learn to type like you do and write a sentence? was it your diet? I have tried everything with my 13 yr old son, and yet he still has to miss recess everyday and eat by himself because the school he is currently in cannot handle him.

we finally got him approved to go to a private school, but whats odd, is that the schools that cater to kids with Aspergers wouldnt take him. Which is really odd, because if aspergers is autism, then why wouldnt they take my son with autism.

They are very very different and I personally think they shouldnt even be treated as the same. Its like saying a child with ADHD is like a child with MR.

apples and oranges and never will the two be like each other.

but what do I know, I'm an awful parent who couldnt cure my child like jenny mccarthy.

Marius Filip said...

Harold

I find the royal "we" disturbing because of things non-related to the issue of representation. I believe the royal "we" is much worse than that.

I'll take the example of play (I mention it because of my son's therapy these days).

It is well known that autistic children do not play or play in restricted, repetitive and non-imaginative manner. This is a play behavior directly affected by autism.

Now, Michelle Dawson, in her infamous "The Misbehavior of Behaviorists" (I guess) emits the formula "the way WE play" (emphasis mine). What WE? Is there an "autistic" way to play?

This royal "we" goes beyond the right of Ari Ne'eman to represent all autistics or not. By this "we" they try to introduce the concept of two kinds of people: the neurotypical non-autistics and the autistics.

So, we're not one species anymore. We're basically two human species, the non-autistics and the autistics looking similar on the outside but having a completely different - but equally valid - internal reality.

This is one more shameless way to assert that autism is not an illness but an alternative way of brain wiring, of way of life, etc. Michelle Dawson even speaks about "autistic intelligence" (?????).

I reject the ideas of "autistic way" of playing, "autistic way" of communicating, "autistic way" of thinking, "autistic intelligence" and "autistic way" of life.

Autism is a brain disorder, a grave and profoundly debilitating brain disorder.

There's no such thing as autistic intelligence. We only have human intelligence, with enormous variability. This intelligence may be impaired more or less by many illnesses, including autism.

And if people like Ari Ne'eman, Michelle Dawson or others achieved anything in life, they can be rightfully commended for their achievements.

But these merits do not transfer to the illness itself, which is not a mere "different way of life" but a hindrance to the ones affected by it.

Marius Filip said...

Socrates

Before advocating for services, Ari Ne'eman should acknowledge publicly that autism is a brain disorder, it is something bad for the individual and for the society and, as a consequence, it is something that deserves to be eradicated.

That "strengths and challenges" is an empty formula that tries to shove the realities of autism under the rug of "not disabled, just different".

Correctly if I'm wrong, but neither Michelle Dawson, nor Ari Ne'eman, nor others have publicly stated that, by its nature, autism is a profoundly disabilitating condition, essentially bad for the individual and for the society.

Only after that he can talk about services. Advocating for services while rejecting the biggest service that the society can bring to autistics, that is, a cure, is both illogical and immoral.

An unemployed person who rejects three job offers from the Work Agency loses his unemployment paycheck (that's how it is here in my country, perhaps in the US and Canada very similar).

My question is: why would the society spend the taxpayer's money on a bunch of people who don't want to get rid of their disability (assuming there is a way to do it)? Why would the taxpayer agree to paying a person who wants to be paid in order to stay disabled?

This I don't understand.

Regarding the right of Ari Ne'eman to represent all autistics, there is one thing you overlook: lots of people whom Ari includes in the royal "we" are not able to decide for themselves.

Hence, their silence over the matter does not count as tacit acceptance of his views despite the fact that they share with Ne'eman the same spectrum.

Stephanie Lynn Keil said...

I recently recieved an AS diagnosis, Harold. No one would help me with the autism label, I kept getting thrown into the hopeless pile. Now that I have the AS label I am finally getting help. Maybe that is the secret: you have to be high-functioning enough to even get real help.

Since I now have the AS label I can now speak for people with AS and I can tell you that it still sucks.

Claire said...

"As far as whether they 'have any right whatsoever to oppose efforts by parents to treat and cure their own children's autism disorders?',
I would disagree that they have the power to actually oppose this from happening. If their efforts eventually lead to a policy decision or other enforceable result, then that simply means their efforts brought about that result through legitimate system-based means that all of us have access to and can impact in the same way."

This is nice on paper, Steve D., but is a bit naive. Money talks and if what you say will save governments and school boards money, that is what they will listen to and subsequently implement. Full inclusion is cheaper, no treatment is cheaper...hence we have full inclusion and no treatment. Period.

Steve D said...

Claire -
Naive or no, I am unaware of any examples of any self-advocate violating a law or otherwise overreaching their rights (rights common to most western societies) to further their agendas.
And in the case of Ari Ne'eman, many of his organization's goals are almost universally agreed upon. As a matter of fact, some even run parallel to some recently-mentioned concerns on this very blog. Here are some excerpt's from Ari's speech delivered to the Florida Autism Taskforce on World Autism Day in April 2008:
"There remains a shocking lack of awareness for the needs ... of autistic adults."
or
"Many adults on the autism spectrum continue to suffer in institutions, despite the Supreme Court decision of Olmstead v. L.C., promising community living options for adults with disabilities"
or
"Autism training for law enforcement (as well as other emergency personnel) remains a key issue. Many of us possess significant difficulties with communication, particularly in high-stress and anxiety-provoking situations."
or
"In a broader sense, educational needs for students on the spectrum must be given additional focus. There has already been a productive discussion on the issue of early childhood educational methodologies. It is important to keep in mind that any educational intervention should be aimed at the acquisition of skills, not trying to enforce an arbitrary standard of normalcy."
These are just a few examples of advocacy that can be beneficial to individuals of all 'severity'. Should Ari remain silent on these issues? Is it naive to believe that many such goals are good goals, regardless of any potential increase or decrease in cost of service?

Autism Reality NB said...

Steve D

When Ari Ne'eman uses the Royal WE and says WE don't want to be cured and purports to speak on behalf of other people's autistic children he is most definitely over reaching.

Socrates said...

Futher to Steve D, these points have relevance to the wider disability community and society as a whole.

It is fundamentally about Human Rights for all.

And further to TannersDad's opening comment, removing Aspergers/HFA from the spectrum would immediately cut the 'autism epidemic' around 80%.

Autism Reality NB said...

Socrates

Removing HGA/Aspergers from the autism spectrum of disorders would reduce the incidence of ASD's substantially. By how much though is unknown, by you or anyone else at this time.

Socrates said...

Seriously Harold, you can do better than that.

See Baird et al. SNAP studies.

LFA c20%, HFA/AS c80%.

Claire said...

I suppose I remain uncomfortable with a few quotes taken out of the general context of the neurodiversity agenda...and similarly from the rigid social disability agenda...which has a clear and repeated tendency to ignore the realities of those severely affected by autism (and disability more generally.)

Steve D said...

Harold -
Do you have a recommendation as to how he should instead refer to himself and others who support things such as educational inclusion to the least restrictive setting, and support for autistics throughout their lifespan?
I'm not being snide, I am asking an honest question.
Do you think it would be more appropriate if he parsed out his "we" to include only those who agree with him? Or should he parse his "we" to include only those of a specific 'severity' level?
Should he say "autistics who share my worldview want societal support without the need to 'cure' us?" or say "Those autistics who are capable of complex cognitive functioning may have better quality of life in appropriate community-based settings as opposed to institutional residence."
How does one best avoid the royal "we" when earnestly trying to improve quality of life for such a diverse group of people?

Autism Reality NB said...

Steve D

You are not being snide, you are just being silly.

It is not necessary for Ari Ne'eman to pretend to the world that all autistic persons, including other people's children, do not want to be cured in order to tell the world that HE does not want to be cured.

Marius Filip said...

I would like to observe in the fragment cited by Steve: "It is important to keep in mind that any educational intervention should be aimed at the acquisition of skills, not trying to enforce an arbitrary standard of normalcy."

Right ... being normal is the worst case scenario for a person with autism. THAT has to be avoided at all costs.

What Ne'eman and friends ignore is that the decision whether a skill values a dime or not is based on its usefulness to society.

Yeah, that society filled with neurotypicals falling in the "arbitrary normalcy" range that Ne'eman and friends seem to loathe so much.

I find typical for our ND friends how they put severity between quotes (as if autism severity were a piece of cake) and how they try to divert from the issue by bringing in discussion topics like suicide which is a major issue for things like depression and not for autism.

They come up with studies supporting the idea of 80% of autistics being HFA.

Yet, they ignore the high incidence of mental retardation which this great and fortunate condition named autism brings with it.

Socrates said...

"They come up with studies supporting the idea of 80% of autistics being HFA"

This figure is not in dispute. It's as close to solid fact as science will get.

"Yet, they ignore the high incidence of mental retardation which this great and fortunate condition named autism brings with it."

Que?

Autism Reality NB said...

From the ICD-10:

Autistic Disorder

...

In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation. Most individuals with autism lack spontaneity, initiative, and creativity in the organization of their leisure time and have difficulty applying conceptualizations in decision-making in work (even when the tasks themselves are well within their capacity). The specific manifestation of deficits characteristic of autism change as the children grow older, but the deficits continue into and through adult life with a broadly similar pattern of problems in socialization, communication, and interest patterns. Developmental abnormalities must have been present in the first 3 years for the diagnosis to be made, but the syndrome can be diagnosed in all age groups.

All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.

Includes:
* autistic disorder
* infantile autism
* infantile psychosis

Socrates said...

Seriously Harold, the ICD-10 is right out of the Stone Age. And it says nothing about prevalance. 3/4 of Kanner's Autistics have some degree of MR - the others are HFA:

Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T.

Newcomen Centre, Guy's and St Thomas' NHS Foundation Trust, London, UK.

gillian.baird@gstt.nhs.uk

BACKGROUND: Recent reports have suggested that the prevalence of autism and related spectrum disorders (ASDs) is substantially higher than previously recognised.

We sought to quantify prevalence of ASDs in children in South Thames, UK.

METHODS: Within a total population cohort of 56 946 children aged 9-10 years, we screened all those with a current clinical diagnosis of ASD (n=255) or those judged to be at risk for being an undetected case (n=1515).

A stratified subsample (n=255) received a comprehensive diagnostic assessment, including standardised clinical observation, and parent interview assessments of autistic symptoms, language, and intelligence quotient (IQ).

Clinical consensus diagnoses of childhood autism and other ASDs were derived. We used a sample weighting procedure to estimate prevalence.

FINDINGS: The prevalence of childhood autism was 38.9 per 10,000 (95% CI 29.9-47.8

and that of other ASDs was 77.2 per 10,000 (52.1-102.3),

making the total prevalence of all ASDs 116.1 per 10,000 (90.4-141.8).

A narrower definition of childhood autism, which combined clinical consensus with instrument criteria for past and current presentation, provided a prevalence of 24.8 per 10,000 (17.6-32.0).

The rate of previous local identification was lowest for children of less educated parents.

INTERPRETATION: Prevalence of autism and related ASDs is substantially greater than previously recognised.

Whether the increase is due to better ascertainment, broadening diagnostic criteria, or increased incidence is unclear.

Services in health, education, and social care will need to recognise the needs of children with some form of ASD, who constitute 1% of the child population.

Autism Reality NB said...

Socrates the ICD-10 reference is to Autistic Disorder and excludes Aspergers.

As you know the definition of Aspergers even in the DSM expressly excludes persons with cognitive delays.

Ironically your argument confirms the point of my original post. The grouping of Aspergers with Autistic Disorders, AND the efforts of Neurodiversity advocates to speak on behalf of all "autistics", obscures the realities, the challenges, of those with lower functioning Autistic Disorder.

Katie Miller, Ari Ne'eman and Alex Plank have Aspergers Disorder. They do not share the same challenges faced by persons with Autistic Disorder and they should not pretend that they do. Nor should they pretend that their condition gives them the right to speak on behalf of persons with Autistic Disorder.

Marius Filip said...

Socrates

The fact that Aspergerians do not have problems with mental retardation doesn't mean that it's not a problem for the spectrum.

In fact, I can tell you as a parent of a child with autism, this is the MOST dreadful thing about this disorder - and not the rigid mannerisms, the repetitive behavior or whatever "co-morbidity" of the condition (at least to me).

The autistics understand less, express less and can participate less fully in the world that surrounds them.

And this is true even for Aspergerians (the real ones, not the self-diagnosed weirdos who have nothing else better to do than pretending on the i-net to have a brain disorder) who are not impaired cognitively but have a lot of problems in other areas that I don't have to mention here.

Now, all these realities don't seem to surface on the agenda of Mr. Ne'eman and friends.

On the contrary: recovery from autism through behavioral intervention is constantly mocked (i.e. the whole bunch of professionals and parents involved in this don't even know how to perceive reality), to oppose a cure is the default policy of the group, no real distinction based on autism severity is really acknowledged, pretty much every aspect of autism that's embarrassing to the "positive autism" agenda is either denied or labeled as co-morbidity and, the last but not the least, it is induced the idea - more or less openly - that autism is not a brain disorder and a terrible mental illness but a different wiring of the brain, with its own strength and weaknesses but nevertheless equally valid with the rest.

And to complete this infamous picture, people like Ari Ne'eman & friends dare to say they are in the civil rights movement. I consider this an insult to the memory of people like Mahatma Gandhi, Martin Luther King Jr. and many other luminous figures of humanity who fought for basic justice and the triumph of the human spirit.

Why? Because you cannot base a fight for justice on the wicked foundation of a lie. Because Neurodiversity IS a lie. Why? Because it denies something that every person with some shred of common sense can see with open eyes.

If Ari Ne'eman ans his friends acknowledged the devastating effects of autism and fought the good fight for the cause of their fellow autistics, I am sure that people like Harold Doherty would rally with them at once.

But, unfortunately, neither Ne'eman nor other people of his ilk chose that path of honesty. On the contrary - to the ultimate disservice of the whole autistic population, I dare to say.

Socrates said...

Marius,

Firstly, my father has two low functioning cousins - so I've seen the reality of lfa across the lifespan. Furthermore I used to run a playscheme for special needs children, about 60% of whom were lfa.

"The fact that Aspergerians do not have problems with mental retardation doesn't mean that it's not a problem for the spectrum."

This is not in dispute by me, and I pretty sure by Ari.

"In fact, I can tell you as a parent of a child with autism, this is the MOST dreadful thing about this disorder - and not the rigid mannerisms, the repetitive behavior or whatever "co-morbidity" of the condition (at least to me)"

Well, dreadful is not an adjective I would ever use to describe my personal experience of lfa. But admittedly, I'm not a parent up at 2am with a screaming child.

"The autistics understand less, express less and can participate less fully in the world that surrounds them."

This is not in dispute either.

"And this is true even for Aspergerians (the real ones, not the self-diagnosed weirdos who have nothing else better to do than pretending on the i-net to have a brain disorder) who are not impaired cognitively but have a lot of problems in other areas that I don't have to mention here."

I can assure you I participate very fully in the world around me, and always have done. You have problems in as much as G-d didn't grant you the talent to play the Violin like Yehudi Menuhin. As such you are not able to participate in the Boston Symphony Orchestra. You have my deepest sympathy.

"Now, all these realities don't seem to surface on the agenda of Mr. Ne'eman and friends."

If you take sometime to read Ari's words you'll see this simply isn't true.

"On the contrary: recovery from autism through behavioral intervention is constantly mocked (i.e. the whole bunch of professionals and parents involved in this don't even know how to perceive reality)"

I'm not up to speed on ABA, but Ari hasn't junked the idea of ABA as possibly being of some use. Much to the shargrin of Michell Dawson - whose position on this, is that autistic deserve the protection of the law and medical ethics and science - and as yet she maintains, the evidence isn't clear cut as to the efficacy of ABA.


"to oppose a cure is the default policy of the group, no real distinction based on autism severity is really acknowledged"

And like is the Pope Jewish?

Socrates said...

"pretty much every aspect of autism that's embarrassing to the "positive autism" agenda is either denied or labeled as co-morbidity"

I see no denying of the problems, simply a choice to present a more rounded picture of the whole - to redress the balance of the propaganda of Aut Spks - who, may I add, are quite happy to post pictures of kids like yours, while lumping the 80% of haf/AS into the statistics and screaming "EPIDEMIC".

"it is induced the idea - more or less openly - that autism is not a brain disorder and a terrible mental illness"

It isn't a mental illness - it's a mental disability.

"but a different wiring of the brain, with its own strength and weaknesses but nevertheless equally valid with the rest."

Ca Plane Pour Moi :-)

|"And to complete this infamous picture, people like Ari Ne'eman & friends dare to say they are in the civil rights movement. I consider this an insult to the memory of people like Mahatma Gandhi, Martin Luther King Jr. and many other luminous figures of humanity who fought for basic justice and the triumph of the human spirit."

As opposed to the T4 option advocated by Aut Squeeks?

"Why? Because you cannot base a fight for justice on the wicked foundation of a lie."

Nor on half understood facts.


"Because Neurodiversity IS a lie. Why? Because it denies something that every person with some shred of common sense can see with open eyes."

Well, clearly a tour around the interwebs will tell you that "every person with some shred of common sense" does not agree with you - including Prof. Baron-Cohen.

If Ari Ne'eman ans his friends acknowledged the devastating effects of autism and fought the good fight for the cause of their fellow autistics, I am sure that people like Harold Doherty would rally with them at once.

But, unfortunately, neither Ne'eman nor other people of his ilk chose that path of honesty. On the contrary - to the ultimate disservice of the whole autistic population, I dare to say.

Marius Filip said...

Socrates

OK, so autism is like me not playing violin a la Yehudi Menuhin. THIS is the kind of relativism that poisons the Neurodiversity ideology, my friend - that's why ND is so dangerous.

You can try to drown everything in relativism as much as you wish, but you'll fail. For your information, people are not supposed to play violin a la Yehudi Menuhin, so I am nothing out of normalcy because I don't have that talent.

Yet, normalcy includes things like:
1) be able to have fluent talk by age 4, which 40% of autistics cannot.
2) be able to have an IQ over 80 which 80% of autistics do not have.
3) be able to do exploratory play by age of 12 months, do pretend play by age of 18 months, do parallel play by age 2,5 years and do cooperative play by age of four. Most autistic kids don't do any or most that.
4) be able to comprehend ideas, some abstract thinking, figurative thinking, innuendos and jokes by the teen years. Even many Asperger's cannot do that or do it with reduced skill - let alone the LFAs.
5) be able to hold a job and earn their bread upon reaching their adulthood, or found a family if they wish - which most autistics cannot do.

... and the list goes on and on and on, for any portion of the human development over 3 years of age. Do you have to be Yehudi Menuhin to do all those?

You don't have to compare me with Menuhin. Compare me with the average, common person that populates this planet. And apply the same for the autistics and look carefully at what results from that comparison.

And, as matter of fact, Menuhin himself was a genius only by comparison with regular people as well.

Because, if most of the humans had been at his level, he would have stopped being a genius - he would have been quite a common guy.

Marius Filip said...

Socrates

I do not want to push this to an endless argument.

My point is this: the Asperger's are one case, the HFAs are another and people with LFAs are another. Do not push forward that 80%/20% ratio of HFAs/LFAs.

Ask yourself how many of those "80% HFAs" are capable of having an independent life, holding a job, having friends and not being socially isolated. Jonathan Mitchell is an HFA but cannot hold a job, Stephanie Lynn Keil is HFA (an Aspie now) but she cannot pay for her tuition in school and she is afraid of people on the street, and so on ...

If you can prove that 95% of those HFAs that you boast about are performing at levels comparable with the neurotypicals of the same age, then I'll agree with you that autism is not much to make a big fuss about, I'll stop at once the exhausting therapy with my son (whose diagnosis is PDD-NOS but he's much like an Aspie/HFA now) and I'll say that promoting a better, "more balanced" view of autism is a worthy cause.

I'd rather say the reality proves the opposite of such rosy picture.

Therefore, as a natural consequence, autism sucks quite badly and it deserves no "balanced view" but a complete and permanent extinction.

Anonymous said...

Most people with Asperger's or HFA have average intelligence. Only 1% of autistics are savants, and about an equal percentage of non-autistics are also savants. So the idea that talent (ie, the violin) would disappear if a cure was found is ridiculous