Friday, June 07, 2024

Boston Globe Autism article, 23rd May 2024.





A bizarre article in the Boston Globe newspaper has appeared written by Mother of an autistic child Whitney Ellenby to frame reality in totally different terms to how it is for NeuroDivergent or Autistic people.  


Paul Wady.  May 2024.



















The first I knew about this article was that I was forced to reinstall X/Twitter on my phone.  (Elon, you wont succeed in renaming the thing).  I generally avoid the medium in terms of such pieces because as far as I can see, such parents live in a totalitarian world of their own.  But this piece of writing was so disturbing that I printed it off to examine it.


A Yale University professor with a mentally disabled son who has an autism diagnosis (remember this phrase as it is very significant to my approach and this piece) had endorsed an article in the Boston Globe that day.  He made some odd comments too…


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This was pointed out by autistic self-advocate, Professor Kristen Bottema-Beutel.  A mother of 3 and a researcher at LSEHD, Boston College.  Steve Pinker will not allow anyone he does not approve of to comment on the Tweet.  


It was all part of an attempt to launch the term PROFOUND AUTISM.  For years now a faction of the parents of severely mentally disabled children, mainly based in America, have been trying to assert a frame of reference that involves MILD and SEVERE autism.  It’s like saying mild and severe heterosexuality as far as I am concerned.  You can see the metaphor in terms of stereotypical autism behaviours centred around being learning disabled and having anxiety behaviours sure.  But it’s not a clinical term is it?  Well, they want it to be so.


Ever since I entered the world of neurodiversity after my diagnosis at the age of 41 in 2004, I’ve seen such parents appear in chat groups and newspaper articles.  It’s always the same.  They never get enough support and resent people like myself, who can live independent lives yet claim to have the same condition as their children.  Nowadays some 20 years later, many parents have realised they are like me.  So, there’s more equal mindedness as it were.  


But there was always this hard-core group that came over as demanding absolute control over the term autism.  YOU ARE NOT LIKE MY CHILD became a cliché.  Autistic academic/researcher friends talked about fanatical parents who could not handle having autistic people speaking for themselves.  It appeared to all be about wanting control over narratives.  Total and absolute control.  


So, they spent their lives creating a scenario and narrative that involves fighting, being bullied, for and against scenario’s and yep, TOTAL ALL OUT WAR TO DOMINATE AND OWN THE TERM AUTISM. 


Such people always feel they don’t have enough support for their families.  This is something I think everyone in the autism world knows.  The Boston Globe article makes a few points as if no one on Earth save the parents of severely mentally disabled children know about them.  Not true.  


The usual reinventing the wheel, THIS IS THE TRUTH AND YOU CLEARLY HAVE NO IDEA ABOUT IT keeps reappearing.  Together with that old standard that never gets old…ONLY PARENTS KNOW WHAT THEY ARE TALKING ABOUT AUTISM.  (Probably the first cliché I came across way back in…oooh, two thousand an’ four ah’ reckon’).  


It’s always the same.  Different terms have come and gone.  But still, something just wont evolve with this group.  Which for me demonstrates cult like behaviour.  Also a complete lack of evidence that Neurodiversity, whatever its definition, causes any trouble for their families at all.  Apart from people saying things…


So I looked at this article.  Yep, one more THERE IS ONLY ONE WAY TO SEE EVERYTHING AROUND THE TERM AUTISM, AND THIS IS IT piece.  Which is how such US parent writers always try and frame the term as a concept and a general heading.  Always?  Please read on.  


How do I see the term?  Oh, thank you so much for asking.  You are clearly not the parent of a mentally disabled child who has an autism diagnosis.  You may be like myself, an autistic person.  Or the parents of an autistic person.  


I think that humanity is composed of different brains.  Not the same old same old, some of which work okay and others are faulty to different degrees.  Some people’s brains are like mine, neurodivergent (diverging) from the neurotypical (a Neurotribe as the author Steve Silberman wonderfully puts it in his award-winning book of the same name).  Some Neurodivergent are very mentally disabled, some moderately and some relatively not at all.  A spectrum.  Individual cases.    Just as all humanity is on various spectrums.  


Physical ones over how our bodies vary.  Sexual and gender ones.  Who knows what other spectrums yet to be defined?


Pretty simple, eh?  We all know all over the world that the first autistic defined where the very mentally disabled, vulnerable and unable to advocate for themselves.  People have grown up with this knowledge for a long time now, haven’t they?  The famous 1996 Hollywood Film Rain Man did not introduce someone like myself to the world.  Dustin Hoffmann played a vulnerable adult, manifesting obsessional cyclic behaviours and sensory vulnerability on a huge scale.  He was also a counting genius with amazing mathematical savant skills.  Nope, not me at all.  


So we have that agreed?  Some autistics are professors, some grandparents and some cannot manage their own anal hygiene or stop biting people.  The whole world over, everywhere, everyone knows that.  


Good.  So now let’s go onto the Boston Globe article.  Which lives on another planet…



My son is profoundly autistic. Please don’t say

he’s merely ‘neurodiverse.’

Advocates are fighting to eliminate terminology that accurately describes my son and thousands of people like him — who can’t speak up for themselves.


By Whitney Ellenby Updated May 23, 2024, 3:00 a.m.




Right from the introduction, things get weird.  Profoundly autistic is not a proper, recognised medical term.  So you decode it and think…oh it’s a metaphor or slang term.  A nickname.  Presumably they mean he’s manifesting Sheldon Cooper or Rain Man or Temple Graundin cliché’s?  You know, all those commonplace, household autism references.  


Or Astrid Murder in Paris and Saga Noren from The Bridge.  Or A Kind of Spark, a BBC tv show about autistic sisters.  Or Dinosaur, another of their shows.  Or Mr Monk, who is hilariously on the spectrum.  I cannot stand Atypical but it does exist as a show.  Oh I could go on and on.  But not parents like the articles author.  


Oh all right then.  Chris Packham the naturist and TV Presenter.  Greta Thurnberg the environmental activist.  Actors Dan Ackroyd, Daryl Hannah and Sir Anthony Hopkins and….on and on the list of famous neurodivergent people goes now.  Ooops!


Turns out the single neurodivergency reference for the entire article is only that her son is severely mentally disabled.  Which as we all know is not accurate to the umbrella heading, covers-a-great-deal term that autism has become.  See?  The domination and assertion fight has begun.  


The second sentence then goes onto say something very odd.  What is this ‘merely’ bit?  He is neurodiverse.  Look up the definition anywhere.  Do I need quotes?  Go use a computer/dictionary.


So a second nail in the coffin of the outside world is placed.  Hang on, what is going on here?



Advocates are fighting to eliminate terminology that accurately describes my son and thousands of people like him — who can’t speak up for themselves.



Oh right.  So this is an article about using the right language around neurodiversity/neurodivergency/autism.  But are people ‘fighting’.  Don’t you mean that people are free to subscribe to any frame of reference they agree with each other provided it’s not hurting anyone.  Sci – Fi fandom talks about light sabres and time machines.  Not real things, yet no one’s banning such talk on the grounds of them being fantasy.  So I see Profound Autism as something that is not a real term, but some like to use it to stigmatise some autistic peoples self-destructive natures, special needs and learning disabilities.  A perjorative term.  WE HATE YOUR DISABILITY AND WE ARE GOING TO CALL IT NAMES PUBLICALLY.  People do that from time to time.  They feel the need.


But still I’m wrong.  This is far more macabre.  The author goes on to allege that a conspiracy is doing a 1984 Newsspeak like campaign to get rid of the very concepts that clearly define his mental disability.  Do they mean terms like SEVERE MENTAL DISABILITY THAT QUALIFIES FOR AN AUTISM DIAGNOSIS?  Or SEVERELY LEARNING DISABLED, or VERY LEARNING DISABLED SPECIAL NEEDS AND DIAGNOSED AS AN AUTISTIC PERSON.


I seem no problem with those terms at all.  Do you?


Do such terms cover everything?  Actually why not eliminate the specific autism diagnosis and just say SEVERELY MENTALLY DISABLED?  The issue apparently is that the magic world AUTISM opens doors to understanding and support the world over.  So parents fight to own it.  Have it loaded with as much negativity and deficit as they can.  Understandable.


But that means a word, which originally meant SELFISM or FOCUSED AROUND ONESELF, becomes a battle ground.  The Boston Globe article was one more attack on those who have another frame of reference.  Which by the way, I think entirely encompasses and supports their children. 


So the article stars…


t was pure coincidence that I happened upon the bloody site. Hoping to surprise my son, I drove to his favorite walking trail, along a lakefront, where I caught sight of police officers in a tense confrontation. Three officers stood side by side in an impenetrable wall while instructing someone splayed out and writhing on the ground. I hope Zack doesn’t get distracted by this scene, I thought.


As I neared the trail, I saw Zack’s aide, slouched inside her car, fully absorbed in texting. She was supposed to remain beside him at all times, but he was not with her. I called out to her, “Where’s Zack?” as my throat tightened with the realization he was nowhere in sight. I began sprinting toward the police officers — only to discover with mounting horror that Zack was the scene they were dealing with.



He was ravaging his forearms with deep, mutilating bites, thrashing angrily on the ground, and then rising to charge at the officers, who patiently but sternly reminded him to “stay seated” and repeated “Don’t panic, you’re not in trouble.” Breaking into the scene, I began a frantic avalanche of contrition. “I’m so sorry, I don’t know what triggered this —” But I was abruptly cut off by an officer who stated calmly, “Yes, we understand who he is and that he’s petrified.”



Somewhere during his sojourn along the lake, Zack, who was 20 years old at the time, had abruptly sat down too close to a woman seated on a bench, who gingerly told him to put on a COVID mask — and Zack bit her on the shoulder for what he perceived as a reprimand. The woman immediately summoned the police, not in anger but in compassion, realizing this young man was seriously disabled and apparently



“He’s not in trouble, the woman’s not pressing charges,” the officer assured me. “We’ve been trying to get him to recount a phone number of someone we could contact—” He halted, spying a robust purple bruise on my calf and deep bite marks encrusted with dried blood along my arms. His tone turned solemn. “I can only imagine what you’ve been through. I do understand.”


I stood in stunned silence. I was not prepared for them to be prepared. It had been 45 minutes since they first gathered around Zack with no identifying information, 45 minutes during which his very safety hinged not only on the instincts of a benevolent stranger whom he assaulted but on a shared understanding by all involved of his clinical identity — that Zack is profoundly autistic.



Oh wonderful. A refreshing description of American police, acting towards a vulnerable learning-disabled autistic person as if trained by someone like myself (I spent nearly 18 years working for a major UK autism charity and a large chunk of that was training professionals in and around what it’s like to be autistic).  Yes the gentle hand of Neurodiversity has touched these good people.  A happy ending is described.  Mom is stunned.  Son is well.  


Phew!  An awful lot of us diagnosed neurodivergent’s do training you know?  You can hire myself and so many others.  Race, gender, sexuality, any make or model of human is available now.  Just use the internet and select whichever trainer type you desire.  


Later on in the article the author says this…



They employed a measured response to his rage by speaking in succinct, assertive phrases, repeating reassurances, and maintaining a physical distance. If they hadn’t had such precise training, which depends on recognizing precise clinical criteria rather than employing general descriptors such as “neurodiverse,” the scenario could have gone very differently — with his arrest, forcible restraint, and even suffocation and death.



I find this paragraph inexplicable.  I don’t understand.  What is she saying?  That her son could have been harmed or killed if the term Neurodiverse had been employed at the scene.  That he would not have been related to in the same way?  The Police were trained and knew what to do BECAUSE they recognised Neurodiversity.  It’s a general heading.  They had received neurodiversity-specific training.  They could have radioed/called Despatch for advice if they had not had it.  They could have contained her son and then called someone in.  


Police do not have to go around tazering and using batons or choke holds (George Floyd style).  They do such things when they have no other choice.  The Police do what they do in order to protect the public and themselves.  Poor Zack is a big male too, we see that in a photo later on.  If you were a Police Office facing this situation, WHAT WOULD YOU DO?  If Zack’s adrenalin were going off, he could hurt you.  Cripple or even kill if he pushed you onto a concrete pavement with enough force.  Or break limbs.  So what would you do if a child were around?  


The article clearly starts with a no-win scenario.  Yet the Police, find a perfect passive solution.  De-escalation.  Nonetheless, the author uses this as her springboard saying…WELL WHAT IF THAT WAS NOT WHAT HAPPENED?  Erm….well as someone who can have meltdowns and look scary when he’s upset, I could not blame the Police for acting against myself if I did all of what is described.  Yet still the author goes on, and believe me it gets far more intense…



What’s remarkable about Zack’s behavior is how unremarkable it is. Autism has been on an inexplicable rise with no signs of a plateau. The Centers for Disease Control and Prevention estimates that 1 in every 36

children born today has autism, and 1 in every 4 of those will have “profound autism,” clinical distinction for those with much higher needs than the more verbally and intellectually able people who also have an autism diagnosis. Individuals like Zack with profound autism have minimal or no expressive language and require round-the-clock care to assist with daily living activities and safeguard them from extreme behaviors such as self-injury, the destruction of property, and “elopement” — the term for running or wandering away from caregivers or secure locations.



I did mention that Profound Autism is not a clinical term at all, didn’t I?  It’s a made up one the author is championing.  Severe Autism has been championed for years and got nowhere.  So now a lobby of people are trying this.  


Originally they used to say KANNER SYNDROME, but this the only proper medical clinical term I know of, was abandoned years ago.  I don’t know why the author does not just use that.  Back in 1943 Doctor Leo Kanner published the first paper investigating children with the properties that Zack has, thus launching the term autism and making it synonymous with disability and disorder. 


Note also the paragraph seems written for readers with have no prior knowledge of all the terms and issues I’ve discussed so far.  Which is significant.  I see the whole piece as some sort of bizarre power grab.  An attempt to take over, assert and own the frame of reference.  Bit late, but here it is?


As with the Harvard professor who gives away that students in one of the best Universities on Earth are now identifying as autistic, the author admits that the ratio of people like her son to people who can be like myself is one to four.  So as far as she is concerned, he only represents twenty five percent of autistic people.  



But while parents like me struggle to manage our children’s dangerous impulses, a powerful cultural movement has taken hold that forbids open discussion of profound autism and its manifestations. Advocates for “neurodiversity” are seeking to eliminate the term “profound autism” — on the grounds, they say, that it makes it seem as if autism is always an affliction. And now they are bullying doctors, researchers, lawmakers, and the rest of society into ignoring truths about Zack’s disorder that define his life.



WOAH!  What?  People are BANNING others from talking about things?  Do you have to use coded terms like that of Piccadilly Polari, a slang that gay people used to use decades ago to hide their sexualities?  Do you visit speakeasys where clinical terms can be used to accurately describe your sons learning disordered autistic nature?  Have I broken rules using the language I just did in this same paragraph?


Boston Herald staff – could you all get shot in the office as actually shown in the tv show of The Handmaids Tale.  No really.  The central character hides in the by then deserted offices and sees evidence of the whole thing having happened.  Do you live in fear of The Neuro Secret Police?  Sounds like it.


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This really is meant to be the offices of the Boston Globe Newspaper.  Series 2 Episode 2, UnWomen.



Or you can just write this in a major newspaper.  It’s published online for the world to find.  People read it.  World does not end.  


Talk about a paranoid rant.  This frightening description of a totalitarian world is just that.  Fantasy.  In actual fact the foundation and main power bloc of the autism world has always been parents like the author.  The most influential and getting everything done has been such family members working with doctors and setting up charities and parent led initiatives.  


Of all charities and organisations around autism in the world today, the bigger and older they are the more parents started and ran them.  Organisations like ASAN, vilified and attacked later in the article, are recent in history.  Few and far between.  But let’s get back to the last sentence.



And now they are bullying doctors, researchers, lawmakers, and the rest of society into ignoring truths about Zack’s disorder that define his life.



How?  Oh you mean by recommending and suggesting?  In print.  I’m not aware of any fire bombing’s on hospitals and universities by the likes of myself.  I’ve not put any one in the Autism Research Centre Cambridge up against walls at gunpoint.  Yet…. ;). 


This statement is not possible and says more about the authors mental health than some non-existent totalitarian dictatorship controlling all our lives.  As usual we have no idea how the societal mechanism she describes, works.  How can doctors, researchers, lawmakers and the rest of society ‘ignore truths’ about a disabled persons life when it is all a bit obvious just meeting them, what is going on?  All you need is a literal straightforward description of their functionality and nature.





I embrace many of neurodiversity’s fundamental tenets, especially the idea that people with intellectual disabilities should be broadly accepted and included in society. I’ve staked my career on this principle — I used to work in the US Department of Justice as a disability rights attorney. I witnessed firsthand the exclusion of people with physical and cognitive disabilities from the rituals of daily life most other people take for granted. 


And I believe parents and professionals must aspire to discern a child’s authentic needs rather than superimpose our own preferences on them or force them into compliant molds of “normal.” Our children do not need to be “typical” to thrive in a society designed for its vast majority, nor is that an attainable goal.



Confused?  Yes, me too.


It is not necessary to go forcing others to speak the right way, if groups purport and maintain frames of reference that are freely available for others to find.  Then decide to use if they wish.  I assume, the author is just being melodramatic about how the majority if not all of medicine and academia think such frames of reference and terms are a good idea.  Ooops…


She always says that some of the most disempowered and vulnerable people in the human race, are bullying people.  Ah yes, those weak and vulnerable types like Doctors.  Lawmakers and…the rest of society.  What, all of it?  Oh, seems so.  Did vans go past my home last week with loudspeakers demanding that only the right terms and phrases be used around autism?  Must have missed the leafletting as people walked besides them, handing them out.  


Oh FINALLY I have some sort of power in life.  I AM AUTISTIC – YOU WILL OBEY!  Heheh.  Love it.


How do you ignore truths that define a mentally disabled persons life?  They are visibly and, in this case, severely mentally disabled.  Her son bites people.  Try redefining that with terms.  Zack certainly makes a case for visibly being like that, having successfully run off from his support worker at the start.  


Then we return to the part I quoted at the start.  Which contradicts itself on account of using a description of perfectly trained and appropriate Police officers who did not do the harmful things ‘THEY MIGHT HAVE DONE’.  Reality one – fantasy nil.



Sanitizing Zack’s diagnosis and intense needs is dangerous. That day out on the lakefront trail, my son’s safety turned on the officers’ ability to decode from his conspicuous behaviors that he has profound autism in particular. They told me they realized that Zack’s refusal to identify himself to them despite repeated requests stemmed from an inability to articulate salient information in a moment of acute stress. 


They employed a measured response to his rage by speaking in succinct, assertive phrases, repeating reassurances, and maintaining a physical distance. If they hadn’t had such precise training, which depends on recognizing precise clinical criteria rather than employing general descriptors such as “neurodiverse,” the scenario could have gone very differently — with his arrest, forcible restraint, and even suffocation and death.



Okay so we have covered this bit.  Her local Police handled the situation – caused by a support worker not being able to stop him wandering off when he was clearly a potential threat to himself and the safety of the general public – and she goes and tries to redefine the whole incident.  How she wants and for her own purposes.  


Yes I think we can all see that.  Because one thing that typifies authors like this, is an inability to see that others can and will perceive their ideas and writing in totally different ways to how they intended.


Which is why I am writing this review.  We then get this subheading.



The intimidation campaign



Okay.  Just bear in mind that the intimidators in question are meant to be autistic adults.  Consider how physically dangerous, relatively intelligent and often quite well educated NeuroDivergent People are?  We intimidate how – conceptually?  Writing pieces like this?  God I’m DANGEROUS according to her.  Oh wait.  This must be the Neuro Secret Police again.  All those raids on newspapers with like the Boston Globe.  (You saw the picture didn’t you – so watch those terms folks).


Yes, this is a subheading.  The article is getting INTERESTING.  


Not that this very article is part of the authors groups own intimidation campaign.  Or that what the author means is absolutely nothing but a different point of view to hers that you can debate, being asserted.  Oh no.  We are talking about societal oppression here.  By autistic people.  



I embrace many of neurodiversity’s fundamental tenets, especially the idea that people with intellectual disabilities should be broadly accepted and included in society. I’ve staked my career on this principle — I used to work in the US Department of Justice as a disability rights attorney. I witnessed firsthand the exclusion of people with physical and cognitive disabilities from the rituals of daily life most other people take for granted. 


And I believe parents and professionals must aspire to discern a child’s authentic needs rather than superimpose our own preferences on them or force them into compliant molds of “normal.” Our children do not need to be “typical” to thrive in a society designed for its vast majority, nor is that an attainable goal.



Pure, unrefined, 24 carat Neurodiversity talk.  Bravo and thank you.  Totally pro NeuroDivergent.  The author demonstrates a clear grasp on the mindset and beliefs of the very group she claims is leading an INTIMIDATION CAMPAIGN and are putting her son in danger with it.  


So the author has completely changed her mind and supports Neurodiversity?  No more paranoia about how it’s illegal to describe her own son’s nature and behaviours.  Because so far we don’t have any evidence from the real world (The Police) that things are that bad.  


But then….



But the concept of neurodiversity is going into dangerous territory if diagnostic distinctions across the spectrum are now considered archaic and bigoted.  In 2021, the medical journal The Lancet published a report from a commission ofworldwide medical experts who recognized the need for “profound autism” as a discrete diagnostic category. The backlash was swift and mighty.


This is a bit odd because it’s like saying Refrigerator Mothers as a concept, or that women are more emotional and less intelligent than men, are concepts that should still be entertained.  It’s as if she only wants medical science to evolve HER WAY, as with embracing the Profound Autism term.  I wonder what other diagnostic distinctions she likes or dislikes?  


Also, as usual, the last sentence is a perfect description of what she is doing in the article.  The same thing as she appears to be reacting against.  A swift and mighty backlash.  I just love all this power and authority that people like myself are said to have?  



Autistic self-advocates launched a virulent campaign to quash the term, arguing that it had arisen, in the words of self-advocate Julia Bascom, “because some parents . . . see their kids as needing different kinds of support and different levels of restriction.  But they are wrong on all counts.” 



This is a misquote taken out of context.  This is the real paragraph in which Bascom spoke, taken from the article Dividing Up the Autism Spectrum Will Not End the Way You Think in Actually the Boston Globe article even provided a helpful link to it so you can see.  


This is the real quote:


The effort to divide up the autism spectrum has emerged mostly because some parents whose kids need a lot of support want to differentiate their child from autistic adults, whom they see as “not like their child.” Such parents believe that they are fighting a different battle than that of autistic adults who can, at times, pass as neurotypical; they see their kids as needing different kinds of support and different levels of restriction. But they are wrong on all counts. First, the fight for rights and supports for all autistic peoples is one fight—and indeed, a difficult one, given the many barriers to inclusion layered throughout our ableist society. Second, autistic people who seem very different from the outside may be more similar than we realize.


So as you can read, Julia Bascom was saying something completely different to what Whitney Ellenby is claiming.  Oooh.  Naughty, naughty, Whitney.


Julia is clearly calling for unity across all autism communities.  Whitney appears in this article to want the opposite.  Elitism and segregation.  Them and us.  Partisan communities.  



The Global Autistic Task Force on Autism Research, an advocacy group, responded to The Lancet commission by saying: “For more than 30 years, autistic people have resisted functioning labels as misleading and offensive.”  As neurodiversity advocates denounce any framing of autism as a disability that requires medical intervention, they demand more support systems for people with autism, such as independent living “that honors authentic forms of human diversity.”



There is something a bit odd about this paragraph.  It goes on to explore what it is saying further and I will but I’d like to dwell on this for a short while.


Here the author tells the truth.  Yes, people like myself really do have these ideas and do these things.  But why?  Also note DENOUNCE ANY FRAMING OF AUTISM AS A DISABILITY THAT REQUIRES MEDICAL INTERVENTION…does that sound vague to you?  What kind of interventions is the author referring to?  Life saving ones, or medical treatments you’d give anyone?  How about learning and teaching interventions that you’d give any learning disabled child?  Is this a reference to cures and treatments designed to ‘ameliorate’ the ‘symptoms’ of the child’s neurodivergent nature?  What?


There is a lot of implication in the piece of what is now seem as an outmoded and out dated frame of reference.  It’s like in the UK with the older generation going on about immigrants and too many people in the population who are not their race, religion and sexuality.  Good job it’s not 1066 and all you would hear is BLOODY NORMANS COMING OVER HERE AND KILLING OUR KING AND TAKING OVER THE COUNTRY.  Before then it was the Danes and before them, the Romans.  Get used to it.  


The analogy above follows through…society evolves.  It changes.  Normal moves on.  For me Neurodiversity is the new normal.  It’s always been my personal normal too, but I had no idea until 20 years ago.  These parents are trying to turn back time.  To when there were just the sick – and the healthy.  The superior and the inferior.  The strong and the weak.  The competent and the incompetent.


I think all these concepts have a lot to do with the authors group.  Her world.  


Then there is the last sentence.  Is the author rallying against…. they demand more support systems for people with autism, such as independent living “that honours authentic forms of human diversity.”


If you cannot cure these mentally disabled autistic people, and parents tend to die at some point, would you mind telling me what else are you supposed to do?  


There is a dirty little technique in arguments, where you take your opponents arguments, state them in full, then undermine them.  Maybe not directly, but represent them so as to make them seem unsound to some degree.  You don’t win, but you mildly sabotage.  You then do this to every argument you can.  At the end of the list of points you have opposed, you get a subtle effect. 


Let’s go on.



Groups like the Autistic Self-Advocacy Network, people who identify on social media as #ActuallyAutistic, and parent activists insist that there is no such thing as a “normal” brain, only relative differences that render all humans “differently abled.”



Oh no – the author has identified their enemy’s hashtag!!  Note she targets ASAN, of course, but also THOSE WHO IDENTIFY ON SOCIAL MEDIA AS… without any reference to such people having a formal autism diagnosis.  Odd because like myself, many of us have.  Mine is from December 2004 in Cambridge.  The author just loves implying that anyone who argues with her point of view DOES NOT HAVE A FORMAL MEDICAL DIAGNOSIS.  How would she know?


The last part about differently abled is so common sense to me, that it’s frightening the way she’s stated this fact.  



To them, frank discussions about profound autism give a distorted image of people like Zack as unpredictable, cognitively limited, and presenting more behavioural challenges than the general population. Except the image is not distorted. While it’s painful to accept, these descriptors are accurate. Over the course of a single day, Zack, who is now 23, might furiously pummel his head in rage, slam his body into a wall, and bite me hard enough to draw blood.  



Try reading the above paragraph several times to see how it scans, please?


Right.  Do you see what I do?  First point is that she is saying that the ND movement refute Zack’s reality.  The image they say is distorted, is not distorted.  But where the Hell does the author get these almighty generalisations?  What, every single person on the spectrum who self advocates says this?  ALL OF US?  Are you sure.


I don’t think this is true at all.  You can have any opinion you like in life.  For example, I for one entirely agree that what is being described by Zac’s mother must be true.  End of.  Big deal.  Okay so that’s a fact.  


Then what?  Do you see – is this the smoking gun that proves it all?  That all Neurodiversity Advocates are delusional fools?  I’ve never met Zack so how can I know if his Mother is telling the truth.  We just have to trust her.  IT’S NOT THAT BIG AN ISSUE IN HIS LIFE IF ZACK IS RECEIVING THE LEVEL OF SUPPORT THAT THE POLICE GAVE HIM AT THE START.


But you may not have seen something else here.  This is a vivid description of an overwhelmed, melting down autistic person.  Someone in anxiety and overstimulation or even pain.  We are fine when not triggered by stimuli.  Zack is only represented by his WORST-CASE SCENARIO.  Just enough for his mother to make out that he’s always like this.  But even she admits that he is not, doesn’t she?  She says he MIGHT do all those things.  


Like the Police MIGHT have chocked his neck to death.  Which they did not.  


Feeling a little anxious after that paragraph?  I think that is the idea.  A writing device.  Trigger anxiety and make it part of the experience of reading the piece.  



The neurodiversity advocates — whose members are distinguished precisely by their ability to advocate for themselves, as Zack cannot — are not illuminating the complexity of autism; they are castigating into submission anyone who dares to deviate from their accepted language.



YOU WILL OBEY THE SECRET NEURO POLICE!  OBEY!  OBEY!  I’d love to see the outfits they wear.  I imagine these pastel-coloured (low arousal) helmets with mirrored glasses.  Big motorcycle style ones that dampen sound.  Sensory friendly leather jackets, or materials that do not worry the skin at all.  Stuff like that.  I wonder if they carry batons, or Sudoku puzzle books and encyclopaedias they force you to read and then ask you questions about?


What exactly does she mean by THE COMPLEXITY OF AUTISM?  Has this woman ever bothered to read any books and pieces by autistic adults?  Where does she cite reading to this effect?  Nowhere.  Nor is there any knowledge of the complexity of such writing.  I am a diagnosed autistic – is this very piece a fine example of such simplistic writing and understanding?  


Actually while I think of it, do we have any proof the author has ever bothered to get to know any of us self-advocates personally?  No evidence so far.  Yet she certainly has a lot of opinions about us.  


CASTIGATING INTO SUBMISSION…Sounds a bit S and M to me.  Outright kinky.  Madam – keep your private life out of this writing.  Reign your sub conscious in, Whitney.  Again a reference to the monolithic and all powerful Neurodiversity Movement.  


I really want the ND Police to have capes too I think.  Black ones.  



Intolerance for the term “profound autism” is leaching into medical journals and doctors’ practices. 


Leaching?  A reference to a parasite that drinks its victims blood.  Right. 


Doctors who’ve devoted their careers to treating children who compulsively ravage their flesh and slam their skulls into the ground are now verbally castrated on social media and “cancelled” from lectures so regularly that preserving their livelihood requires stifling crucial medical data


Verbally castrated?  Cancelled from lectures so regularly…stifling crucial medical data.


It is not possible that any doctors who work with the severely mentally disabled could have ‘crucial medical date’ stifled.  Think about it.  You’d end up with the Police involved and people doing it getting banned from events or having restraining orders put on them.  


Also, as usual, what is the author talking about?  What is this crucial medical data?  


Massive melodramatic generalisations.  It’s like a sci fi drama?  



It’s become common for autism self-advocates to “shout down” researchers imparting medical data at conferences or to call the researchers out on social media for online hazing and threats by neurodiverse mobs.



NEURODIVERSE MOBS.  What?  Where…oh she means when you get lots of people agreeing against a person on say, Twitter.  The all-powerful medium that controls and determines humanity.  Or Facebook?  Yes – Facebook, the dominator of all medicine.  


The conferences’ part is to my knowledge true, but no one’s shouting at anyone.  What has gone on that I know about is members of the audience laughing at presentations.  This phenomenon is real.  It’s gotten worse for many years now.  Can you work out why it goes on and who is doing it to who?


More and more autistic academics are attending conferences.  Nonautistic researchers and academics have always presented.  But not to increasingly Neurodivergent audiences.  2 plus 2 baby.  It is obvious if you have ever been to one of these things.


Anyone can call anyone out on social media.  The Harvard professor quoted at the start, does it to all Self Advocates then blocks any replies excepting the people he approves of.  



Today, both experienced and newer autism researchers contemplate leaving the field because, as one University of California scientist, David Amaral, observed, “People are getting reluctant to give public presentations or to be too vocal about what they’re finding,” despite the fact that “science is supposed to be about communication.” 


Science is about getting the science right.  Ever considered it is the autistic who know about autism?  Well I think we can acknowledge that as far as our Whitney here goes, only the parents of severely mentally disabled autistic people know….etcetera.  Maybe David is in fact alluding to people having a problem with feedback and autistic peer reviewing?  


David Amaral’s name is a link to an article about this.  I recommend reading it.  It’s a well written and balanced piece.  I assume the gambit was that readers might not try reading it.  You will find that as usual…yep.  The author has cherry picked.  In actual fact the article explains a big sophisticated debate over terms, between level headed adults who all have good points to make.  But did that come across in Whitney’s article?  



Top research institutions like the National Institutes of Health (NIH), tasked with conducting clinical trials to illuminate the disorder, face vitriolic accusations of being “ableist” and uncomprehending of the very people they are trying to help.


After the The Lancet’s commission recognized “profound autism” in 2021, 


Erm….the Lancet recognised the need for a diagnostic term like Kanner Syndrome that singled out really mentally disabled people who qualify for autism diagnosis.  But not Kanner Syndrome.  A phylum term, a category BUT WHAT EXACTLY IS THE AUTHOR LOADING SUCH A TERM WITH?  I mean what significance and meaning.


You know, this is a very big question.  Teleology – where is this all going in life?  We have already seen sight of treatment and curing references.  The obsession with power grabbing the term autism, we assume for the sake of getting support with such family members.  But is there a golden future and ultimate goal here?  Something we’ve not got to yet?  Lets go on.



the journal published an article by a doctor who wrote: “Generally, physicians think that disability is medical, and that if a patient’s condition interferes with their daily life, they are disabled. This traditional, medical model of disability does not address societal factors that influence disability, nor does it recognize disability as a cultural identity. Viewing disability as an issue stemming from an impaired body can encourage physicians to view disabled patients’ quality of life negatively . . . and to

offer treatments aiming to fix the patient.”


If you know anything about medicine, or have watched enough episodes of the tv series House and decided you are more or less the same thing, then you will realise that what you just read is the foundation of more advanced treatments, procedures and diagnosis.


That all you just read, is the obvious.  It’s the basic perspective on the human body and medicine.  So then the author takes this and…



This is absurd. I know of no person with profound autism who proudly identifies self mutilating or violent impulses as core to their “cultural” identity. There is nothing bigoted about striving to ameliorate dangerous behaviors. More critically, it is not the role of medical researchers to kowtow to trending cultural demands at the expense of addressing medically life-threatening conditions. 



I think it’s another trick.  1 + 1 = 2 writing.  Okay so that all makes sense to me.  



Erasing diagnostic distinctions will make it impossible to perform research into the behaviors that are associated with profound autism — research that could lead to drugs that could benefit people across the entire autism spectrum. Although about 27 percent of all people with autism have profound autism, the condition is already underrepresented in clinical trials, which typically exclude those with an IQ lower than 70.



Do you think this is true?  I don’t.


You just find another way of framing the same reality.  Whilst understanding the issues that Neurodiversity has raised around identity.  You describe symptoms with respect and approach the patient as a neurodiverse person.  You don’t do what the author is saying.  That’s a bit paranoid.  


The reason that people with IQ’s under 70 are under represented are multiple.  One is, what are these trials and what would you do to someone that vulnerable?  There it is again.  Statements made as if WE ALL KNOW WHAT I MEAN.  Well no I don’t think we do.  It’s like you are living in your head, Whitney.  You are dictating from your own, utterly righteous and correct viewpoint to the extent that you don’t need to waste your time explaining your frames of reference.  



Two years ago, my son was abruptly ensnared in a cycle of self-injury, physical assaults, and chronic insomnia that within days catapulted him into a dangerously manic state — during which he risked seizures and seriously injuring anyone in proximity to him. Introducing anti-psychotic medicine delivered the jolt of serotonin to Zack’s brain that allowed him to reclaim his stability. Might other medicines become available that would work better? A movement that vilifies any medical mention of “risk,” “limitations,” or extreme behaviors has the power to thwart the development of such urgently needed drugs.


WOAH!  What the Hell?  


So now Neurodiversity as a concept…could take away medication needed on a scale like that from a severely mentally disabled child?  How does that work?  You could not take away such medications from ANYONE.  Autistic or not.  I think that is illegal isn’t it?  


The Neurodiversity Movement was this term that I found being used negatively and perjoratively back on twitter in 2019, by a perverse group of trolls (they spent all their time being swearingly nasty and sadistic to anyone they could find to argue with over autism.  One of them turned out to be a convicted paedophile rapist called Daniel Luckman, AKA Tom Graham.  I have an extensive collection of screen grabs to prove this and even, in February 2019, made a short film still on my Twitter account, trying to out Luckman/Graham as lyng about his identity.  A year later the world found out.  The gang – which collectively referred to itself as the Autistic Dark Web, had no idea as to his true name or that he’d done 10 years in jail for raping a child.  Until he got 2.5 more years for grooming a minor on….Twitter).  I feel like some sort of online autistic crime fighter doing that.  


Anyhow.  The Neurodiversity Movement was a term co opted by people like the author of the article to mean an enemy.  The bad guys.  Those who talk nonsense and of course don’t have a clue about children and families (despite many of us having them).  So when you see that or ND Mob then read Bad Guys.  Boo hiss etcetera.



I hope Congress hears parents like me



…and if they do, they will of course see everything discussed in your article the way you think they should. 



The Autism CARES Act, which allocates NIH-funded research and services, sunsets on Sept. 30. Fierce debates are already underway about what Congress should do when it reauthorizes this funding. On one side stand autistic self-advocates who rally against any research not explicitly approved by them. On the other are parents who are desperate for clinical advancements but are so engulfed in the daily ordeal of managing their profoundly autistic children’s aggression and property destruction that they are largely incapable of organizing. 


Another paragraph I’d recommend going over again to really go deep into it.  Them and us.  Good guys and bad guys.  Parents – heroes who know it is to raise children and take such a responsibility.  Bad guys – implied people without kids, probably immature and without knowledge of what it is to have a family.  To provide, to bring up young ones, to inform, love, support….tears in my eyes.


It’s like fascist biology.


Oh by the way.  Did you notice how you did not notice?  Lines like autistic self-advocates who rally against any research not explicitly approved by them.  It does not register because it’s NOTHING ABOUT US WITHOUT US.  See?  Normal thinking isn’t it.  Well not to her.  I think she meant the line abusively.  


Then there was… On the other are parents who are desperate for clinical advancements.  Meaning what?  Cures?  Advancements in what respect?  What is the author referring to her.  Seems a matter of fact line, but go deeper.  Eh?



The few dedicated parents calling for NIH to set aside funding to specifically address “profound autism” are vastly outnumbered by neurodiverse advocates who seek to block the act from passing if such “stigmatizing” language is included.



That’s like objecting to calling gay people perverts by the way?  Also the author refers to nothing more than terms and language.  I am sure the essence of any act that brings respect, support and understanding to Neurodivent People could not be stopped by the ND Mob.  More of the obvious.  



The loudest voices seek to abolish all spending on autism medical research and replace it with select services, such as workforce initiatives, that assist only those with milder autism. It’s here that the idea of neurodiversity poses the greatest threat — a movement that celebrates autism in all its forms, and depicts even the most severe afflictions as “merely a difference,” vehemently opposes any investigation into autism’s causes as ableist.


Punctuation is hers not mine up there.  Anyway, this is fiction.  What she is scrambling as information in order to reinterpret is quite simply, that NeuroDiversity Advocates have no faith in research to find causes and cures because we all know that it’s a hereditary nature, so don’t waste your time and money.


What is not present here is the reality that people like Zack either live with parents or end up in supported accommodations, or hospitals.  That’s it.  One just hopes they have relatives who can either support them or visit.  This is the future that the poor author is trying to avoid for her children.  This is the motive.  I don’t see anything else for them myself.  


The rest of the statements are bizarre because NEURODIVERSITY CONTAINS ALL NEURODIVERSE PEOPLE.  Including Zack.  What is she talking about in terms of support and medical services axed?  Again, any proof in the real world?



The truth is that we still don’t know what explains the steep rise in autism — perhaps it’s the product of widespread environmental contaminants altering our children’s brains — and this increase needs urgent attention. 



Perhaps it’s just hereditary and that’s life.  Generations of people surviving when previously they died young.  Survival of humans all over the world is no longer about being the fittest.  It is the success of vaccination not it’s dangers, the success of medical science has led to so many neurodivergent blood lines proliferating.  Always assuming this ambiguous, catch all umbrella term autism is what it looks like.


No.  We do not know what autism is.  A hereditary human nature, that in some variations is a disorder and disability, in some not and in some both at the same time.  All the while varying over the lifespan in terms of relative societal functionality and the opposite. 


The author never misses an opportunity to slip her own ideas in, eh?



As these children age, state programs already strained by the deluge of adults needing lifelong services threaten to collapse entirely. Capitulating to self-advocates’ demands amid a global proliferation of one of the gravest disorders of our time is not only morally incoherent but medical malpractice.


Medical malpractice is doing what the author says doctors and researchers have no choice but to do, on account of people like me having opinions.  It’s not that simple in life.  Go see your nearest doctor or hospital and question them?  But you will not, will you?  Any ordinary reader would not bother.  That seems to me to be the basis she is working on, making all these statements.  



In the natural course of events, every profoundly autistic child will eventually be orphaned by the most qualified and dedicated caretakers he’s ever known — his parents. 



‘His’ parents note.  This I think is the author’s entire motive.  Who can blame her for trying something.  Anything?  Even an article like this.  



Absent meticulous advance planning and abundant resources, that child will be automatically transitioned by the state to placement in a residential living arrangement. For that child to be placed appropriately depends entirely upon having accurate clinical information about the intensity of his needs, taking into account the possibility of physical aggression, self-injury, elopement, property destruction, seizures, and other overlapping medical needs. I’m confident that if a person facing homelessness and a precariously uncertain future were asked whether he values a safe residential arrangement over semantics that obscure his diagnosis, he would choose the former.



Meaning…. As I said before, how do you obscure a medical diagnosis on the scale of her son Zack?  Medicine uses language appropriate to the reality it faces.  So you have an autistic person who has a low IQ, bites and attacks others when anxious and is generally deeply vulnerable.  There.  I’ve written it.  How can you censor that?  


Anyone reading this could surely make a perfectly adequate assessment of Zack and express it appropriately in terms that are respectful.  It’s not difficult.  



For the record, any language that contorts or constricts the full scope of Zack’s identity is something I find deeply offensive. Zack has struggled with innumerable obstacles and heartbreak in navigating a world that does not come naturally to him, and his competence is strengthening to this day. Blurring his identity under the indistinct banner of “neurodiverse” erases Zack’s lived history — all that he has endured and overcome to get here.



So Zack is strengthening his competence to this day?  Good old Zack.  He will grow up.  I hope I do a bit more as well.  I hope we all do.  I think you will agree that Neurodiversity is not blurring his identity but enhancing and empowering it.  I hope we both move on in our social skills and being able to do what society requires of us, neurokin Zack.  



Whitney Ellenby is a former disability rights attorney in the US Department of Justice and the author of the 2018 book “Autism Uncensored: Pulling Back the Curtain.” She is also the founder of Autism Ambassadors, which runs recreational events for over 800 families affected by autism in the Washin gton, D.C., area.



Now read the reply to the post below.  

A screenshot of a social media post

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Thank you,


Paul Wady


London, May 2024.




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