Neurodiversity proponents have a peculiar way of cherry picking characteristics of autism and hand-waving them into positive and somewhat appealing attributes. Repetitive movements, for example, are labelled as “personality traits” that can arguably be easily stopped at the whim of the individual. These behaviors are usually triggered by stress and may interfere with normal daily activities. Repetitive or stereotyped behaviors include flapping of the arms, rocking of the trunk and wriggling of the toes. Since these behaviors are part of their personality, ornaments as to what makes an individual unique, Neurodiversity advocates argue against medical interventions that would curtail their expression. To readily agree with this proposal denotes lack of understanding and maybe empathy. As in many other instances, Neurodiversity proponents ignore the concept of severity and isolate themselves in a diagnostic cocoon that excludes those more severely affected.
Repetitive movements are chronic behaviors that can be momentarily suppressed. In some cases, self-stimulation («stimming» behaviors) may serve to calm an individual who is confronting an overload of environmental stimulation. These behaviors may also serve as a way of attracting the attention of caregivers when they are otherwise unable to properly express themselves through language. In many cases, however, the reasons for stimming are complex and not fully understood. However, at the other end of the spectrum, those repetitive behaviors that are maladaptive are hard to justify or reason. These behaviors, including head banging, head rubbing, eye gouging, self-biting, and picking at the skin, can be self-injurious and their severity is probably the greatest source of concern for the parents of those so affected. As with stimming, people may partake in these self-injurious behaviors as a way to relieve tensions and unwanted emotions. It has also been hypothesized that someone may exhibit these behaviors as a way of forcing themselves to feel stimuli when they themselves are otherwise hyposensitive. Side effects of self-injurious behaviors include broken bones, retinal detachment, and death. There is nothing rosy about self-injurious behaviors. Calling them a personality trait does not preclude them from being a medical condition which, in many occasions, require treatment. Self-injurious behaviors are not a gift but a disability to those who have them. At the very least, repetitive behaviors should not be considered as part of someone’s personality.
Another disabling feature of autism relates to sensory problems. The brain’s filtering mechanism in autism reacts differently to that of neurotypicals. All senses are affected and, at any given time, an individual may be over or under reactive to a given stimuli. This creates a truly frightening environment to the autistic child. I usually talk about the “dangling or bat child” as being a sign of autism. An infant who avoids and over reacts to touch may throw him/her-self backwards when a parent attempts to carry the child. Temple Grandin has called her sensory problems a major handicap and has received chronic treatment for the anxiety that they, and other attributes of autism, have seemingly procreated. The severity of sensory symptoms in some autistic individuals is a disability, not a gift.
Neurodiversity proponents believe that seizures are a comorbidity of autism. They use the term comorbity to indicate that seizures co-occur with autism but are otherwise independent of each other. This is an important distinction as lack of overlap denotes that one is not a consequence of the other; not an expression of autism but rather a putative «complication». However, two thirds of autistic individuals exhibit electroencephalographic brainwave abnormalities and one third of cases manifest seizures. The latter are in many cases multifocal and recalcitrant to medical intervention. In syndromic autistic individuals (e.g., Dravet syndrome) the presence of seizures is a diagnostic feature of the condition. In many of these patients the genesis of seizures is borne from a defect in neuronal migrations. Primitive cells during brain development fail to reach their target site and remain behind as seizure prone islands of cells that otherwise serve no useful function. The fact that autistic individuals have an excitatory/inhibitory imbalance of the brain has been used as an explanation for sensory and cognitive abnormalities. Autistic individuals are tweaked towards this imbalance by risk genes that mediate the function of inhibitory neurotransmitters. Having this excitatory/inhibitory imbalance is at the core of autism; it is part of whom they are. In a significant number of cases, this imbalance is expressed as seizures. This is not a comorbidity, this is not a different and unrelated condition, seizures and sensory problems are part and parcel of being autistic.
In my previous discussions with Neurodiversity advocates it has been their contention that having seizures is a blessing. They call epilepsy, as others throughout history, the Sacred Disease. As with many of their other arguments this denotes ignorance and lack of empathy. Seizures can affect your state of alertness, mood and memory. Falls during seizures can cause broken bones. Kids with intractable seizures have to wear protective helmets all of the time. The mortality rate is increased in persons with autism who also have epilepsy. Seizures is part of autism. Seeing autism through pink colored glasses should not detract anybody from the fact that this is a medical disorder for which many individuals need treatment.
Cortical Chauvinism 
amen, though apparently some neurodiversity proponents, including simon baron-cohen argue that epilepsy should be treated independently of autism and that the epilepsy should be treated, but not the autism, but give no idea how the brain differences causing autism can be distinguished from the pathology causing epilepsy
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Jonathan says:
Amen (among catholics saying amen like that can be taken as sarcastic)
You say:
Seeing autism through pink coloured glasses should not detract anybody from the fact that this is a medical disorder for which many individuals need treatment.
This is logical but is based on a fundamental error. Nuerodiversity and cure people both neglect basic facts. The former ones as you well point out , neglect facts relating to epilepsy, outcomes, problematic challenging behaviours and the enormous loads that many autistic individuals put on their families. The idea of co-morbidity is due to the abandonnement of hyerarchical diagnoses and this in turn to «pay by clinical act» practices and to being efficient (which is different from being efective). Neurodiverse people, are the beneficiaroes of such efectiveness and end up being a bunch of diagnosed, paranoids, neurotics, narcissistic or antisocial psychopaths, obsessives,drug addicts, hyperactives, etc but they tend to prefer this to recognize autism as a basic disorder however ill defined it. But you make a doubtful asumption that a disorder of an organic type must or can be treated medically. I am sorry to say that this, no just with autism but with many other situations, is a veritable delusion. Disorders of a social and biographical origin can, albeit with mixed results, be treated medically, and some disorders of organic origin must not and are not treated always medically.
The corruption of these facts has various powerful origins which I will not go into at the moment, but it certainly does not move forward the debate between yourselves and the neurodiverse lot including Baron Cohen. And it does not help those of us that have kids with severe autism.
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To Mariano, I think you have a very harsh way of describing neurodiversity advocates. Many are misguided and ignorant, but using terms such as anti social and drug addicted will only make them more firm in their cause. Identity is a mind killer like nationalism or racial pride, the individual matters.
Also if there is no current treatment or the technology does not exist, we need to develop the technology for future generations even centuries from now. We can’t just stop researching and give up.
Plus both hierarchical diagnoseses and tick a box have flaws if seen as absolutes. It is possible to have two conditions, or to have a condition without another. I do believe assuming seizures or sensory issues to be mere «comorbidities» rather than actual symptoms is hogwash, but the risk for ADHD for example is higher among many autistic people, and actual ADHD involving neurotransmitter differences and brain regions.
I also have a hard time understanding many of your posts to be quite honest with you. I understand English may not be your native language, but try to have some brevity. If you understand a concept well enough you can explain it simply.
And to reply to what you may have implied in your other posts: I believe autism is not simple, as if it were merely the result of getting hit on the head as a child and being screwed for lif, there is ample evidence of neuropathology, evidence of a mechanism. It’s not just a developmental hiccup, it continues.
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Hans
I will try to be as brief as your important declaration permits.
Yes i am a Spaniard who lived for quite a while in the UK but that was nearly 20 years ago. I have also visual problems of a migraine type when I look at screens which make my visual field as if I was underwater but I am far from «meanig blind»; if there is a phenotype on the other side of that of autism I am sure I am on it. My son, who is the reason why I come around here, although in many ways a Kanner autistic person is «syndromic». Perhaps all this puts a context to our difficulties in understanding: I am not neurodiverse but most certainly I am not typical either.
I am not against reasearch. I am against the idea of treatment for practical reasons. it is good that logic and hope be part of science but at the moment the facts are what they are and to promote treatment for autism, with actual medications however indirectly, is equivalente to promote organized crime (see Goetzsche). Thousands and thousands of disabled people are being further handicapped and even killed by these treatment.s: look at the facts. I am not either against the use of medications, for short periods and with very rigorous follow up, not to treat autism but to manage a situation for a transitional period. But this is not what happens in the great majority of cases.
ADHD is an industry and the very existence of such disorder has been questionned amongst other by those who invented it. There is a dimension which is «concentration» which varies from individual to individual, and realting to the capacity of stimuli to be rewarding, to the IQ of the individual (too high or too low) and the existence of conditions such as learning disabilities as well as general issues in the familiy, the school, etc. If you take all these factots into account you will see that the actual disorder should be about 1 or 2 in a thousand which is what it used to be when I trained 40 years ago, the rest of the inatention problems being related in a «hyerarchical manner» to learnig, educational and family factors- and to that variable which is «concentration»
I insist that the payment of experts by piece reimboursement is a factor in the huge over diagnostic problem.
I insist that the neurodiverse people do not address the issues that affect the most severe ASDs.
I hope that this goes some way to address ypour questions.
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To Mariano,
I have seen so many of your posts, and I will speak openly and frankly. You are very difficult to understand, you are very blunt to the point of arrogance, if not just straight up arrogant. and despite being a professional seem to lack any sort of compassion or sensitivity for people on the spectrum, even implying the real victims are the people who have to «put up» with people with the conditions if they are on the higher functioning end.
I can barely understand your long diatribes you hurl out without almost any restraint, I would suspect you are not so normal yourself, what with these weird neologisms and phrases you use. Almost all of your beliefs are quite outdated and ignore modern research and science, especially that posted by Manuel in his blog. You just go right ahead and spout out your own view without adjusting to new information. I would never want to be one of your patients.
Your posts are one sided, so one sided it’s impossible to have a two way exchange with you or at least any really productive one. Being a psychologist, you still veer into an anti-psychiatric stance. Saying ADHD is not real or autism has no neuropathology, that there is no enviromental basis, and more nonsense. All these posts by you are just opportunities to advertise your own beliefs and blog vicariously to people you want to hear you. Especially on this kind of blog which is perfect because almost everyone here believes the opposite of you. Even when we try to reply civilly, it’s like talking to a brick wall.
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I will add something relating to epilepsy and my son. He had three episodes of status in one of them he had to have general anesthesia and during the period in hospital was EEG monitored for 24 hours. That was when he was 5 years old. His EEG had not major problems and we concluded that his fever control was very poor and that this was the problem. We did not treat any brain disorder but we had valium enemas and antifebrile medication in the fridge which we had to use succesfully in a couple of further occasions.
One of the reasons why we steadfastly refused antipsychotics for the «treatment of problematic behaviours» , was because the possibility that they lowered the epileptic threshold. That was too the reason why he was excluded for four years and his case ended up in the Spanish Supreme Court on the basis of the Convention of 2006. We defended the setence of abuse of rights succesfully. Of course we were told we were bad parents for not medicating him by non-medical psychologists (!) but we were able to challenge this, most people can’t I have seen people of his generation medically treated, with dyskinesias, dystonias,( a couple os Pisa syndormes) a terribly severe akathisia which was treated with more antipsychotics, an NMS, and of course obesity and diabetes. Some autistic people die becuse medical treatments particularly antipsychotics. El Rubito died of neuroleptic asphysia eating a bap. My son goes to a centre for the disabled, not the best we would like but he manages, he is happy and occupied, we get on welll with the satff there.. He takes no medication.
Commenting on these things is dangerous and expensive, even more so being a doctor. as I am Now I am retired and I do not say much about it, not even the majority of relatives wellcome that information. If I mention this to you is because I esteem your work , I think that the neurodiverse are often wrong and offensive, and I wish you were not as dependent when challenging them as you seem on the issue of «medical treatment».. Autism is a disability as blindness is, and as blindness it does not have medical treatment.
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Mariano, thank you for your thoughtful and personal commentary. I have never said that a disorder because it is organic in nature needs to be treated. In the same token, I have never heard that claim from anybody in the pro- research or treatment group. If manifestations of a disorder are severe enough and affect the quality of life of an individual, a physician can offer choices. It is up to the parents and patients to decide if they should partake in them. I think that the role of the clinician is to provide sufficient information to make this an informed choice and to offer treatment modalities that are empirically based. Personally, I am not aware of the “pay by clinical act” scenario that you report. I have never asked for payment from any of the participants in our clinical trials. I am aware of some commercial ventures that have as an aim a financial reward. Others have instituted alternative interventions that may be dangerous. Although this is a minority I have tried to expose them and have even confronted them in the different congresses, for which I am now a persona non-grata.
I am sorry about the whole ordeal with your son. Your opinion, especially as an informed father and physician should have been taken into consideration. I would only recommend neuroleptics as a last resort, and recognize their multiple side effects.
A person who is blind from optic nerve damage caused by glaucoma may have no treatment avenue. However, a person who has lost sight because of cataracts can have surgery with full recovery. Personally, I believe that certain aspects of autism, as long as structural brain damage is not involved, can be treated and/or ameliorated. At present, we have an ongoing project using neurofeedback that greatly improves attention in autistic individuals, TMS has been proven, by multiple groups to improve irritability and hyperactivity in high functioning individuals, and we have been able to derive biomarkers that foretell which patients will improve and which won’t improve. Overall, I have great faith that we can improve the lives of autistic individuals with interventions/accommodations aimed at those defects that handicap their lives.
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I accept your logic and I am in favour of research. But already Francis Bacon, told us about the uselessness of a logic and a deductive thinking which does no relate to actual facts. The issue of treatment is one that must be related to actual treatments, to how many diagnosed are treated with neuroleptics or other medications, to what are the adverse effects in those treated, and what are the real benefits and all this short, and long term. To say the use is advisable as a last resort and such like things is not science, it is a fragment of religion.and should not be passed as science. And thousands of people are dying from that «religious» use as scientific research demonstrates.
With the «pay- by piece» expression I attempted to refer to the way that doctors and other clinicians,earn their living, not to researches. It is an issue that for political reasons is ignored, but to ignore the fundamental differences between the USA and most EU countries on this issue and the cosequences of such, amounts to a denial which not only has enormous economic and political consequences but which does not favour science at all, as the history of the DSM, an instrument of billing more than anything else, demonstrates.
Please Manuel the mention of «blindness» was on a very general sense !. In any case «cataracts» are a form of blindness as much as some of the neurodiverse are part of autism, perhaps even less. I have been operated from cataracts myself, thanks to the public health service free at the point of delivery, by doctors who were paid a very decent salary from taxation, so I have some personal idea of those subjetcs too.
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Even a person who is blind from optic nerve damage may have hope, not in our century, maybe the next. They successfully implanted a specific form of stem cells with GABA attached (or something) into mice who had damage, it converted local tissue into new pathways for sight.
We just gotta keep at it. I may even towards the final years of my life see autism and other brain conditions finally have huge breakthroughs. Techniques of repairing or even regrowing/training parts of the brain, cybernetic implants, who knows! I would be too old for them, but like my Grandpa who had polio yet lived to see the vaccine be created by Dr. Salk, he could die happy knowing a nightmare that has robbed people of their lives will someday breathe it’s last dying breath.
I hope to see autism lose, and not just, much more, schizophrenia, bipolar, brain infections, age related dementia, all slowly wither away, gasping as they near their ends. If not me, then the next generation will witness triumph, and they can celebrate with the joy people had when it started happening with polio. A shame though, that people were all united and adamant against defeating polio. But the world is not united against autism the same way.
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The previous message was to Manuel in case it went to the wrong person.
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Also there are other medications besides anti-psychotics, I am also skeptical about using huge doses of them for autistic people. There is no current medication (yet) for autism itself but there can be medication for the person with autism, some SSRIs or small dosages of anti-anxiety medicine. Heck, even small doses of some anti-psychotics may temper behaviours, small doses.
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Tetracyclics would probably be a better choice than SSRs but in any case what will you use them for? To hang on to the idea that doctors have answers? For unless you are clear what you use medications for, and that means experience knowledge of the facts and keeping up with them with no regard whatsoever to the drug sellers, unless you there is knowledge, rigour and care, you are going to end up using stuff in such manner that it will sooner or later, hurt you. Look up in Mad in America it will give you some leads.
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Seizures,GI disease,regressions,self-abusive behavior,wandering or eloping,intellectual and learning disabilities,and mental illness among the higher functioning.These are all as much a part of autism as the «positive» features neurodiversity advocates want to cherry pick from the overall picture of autism.We should never have allowed the very high functioning ,who advocate the poisonous doctrine of neurodiversity to present their one-sided view of autism to the world.
Let’s not forget how neurodiversity advocates also provide false hope to parents of profoundly disabled children.
Manuel,can you provide citations,or direct quotes from neurodiversity advocates,where they have called seizures a blessing?Seizures cause a great deal of suffering and disability,as I know all too well.
Mario,you seem to be making the false assumption that what we diagnose as autism is a singular disorder,rather than a feature,of any number of conditions.Some are treatable,some are not.In some cases,both the seizures and the autism can have the same underlying cause.The belief that seizures are always separate from autism,reflects the profound ignorance most people have about the current state of autism research,and the various causes that have been found.
I happen to have been found to have a disorder called cerebral folate deficiency,one of the few highly treatable causes of autism.You can read more about it here.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3578948/
As the article implies,if this condition is,indeed,the cause of the autism,the autism can eventually be reversed,as long as the person continues treatment.The autism in this disorder is often moderate to severe,with other coexisting metabolic,immune,or genetic disorders,and often is regressive as well.I have both other inborn errors of metabolism and a unique chromosomal disorder.Both are types of conditions science is finding more and more in syndromic autism.The type of autism neurodiversity wants to ignore.
Neurodiversity advocates also want to kill any further research into looking into further causes of,and treatments for,autism,which they equate with both genocide against autistic people,and somehow destroying a person’s identity.Only people who have not experienced the worst autism has to offer,could make such absurd statements.
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I have no doubt that autism is NOT a condition in the sense of having a single cause Roger. Autism is a syndrome: a collection of symptoms which tend to appear together.
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Correct Manuel realism and factual relevance are the keys to understanding and grounding you show equal empathy and concern I would not say body agnosias a personality trait either, levels of perceptual body disconnection can cause serious trauma if the person doesn’t have the internal mechanisms to know when to stop. Alexithymia and not being able to recognise your own internal emotions could well present as secondary to mood, anxiety and impulse control disorders as well as stimming which could be a variety of reasons such as visual perceptional disorders such as simultagnosia, semantic agnosias and prosopagnosia, body related «addictions» to chemical highs etc.
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https://en.m.wikipedia.org/wiki/Stimming
http://day2dayparenting.com/helping-child-oral-fixation/
https://en.m.wikipedia.org/wiki/Simultanagnosia
https://www.ncbi.nlm.nih.gov/books/NBK92800/
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I am so glad that somebody at last is paying attention to this central piece of the neurpsychological puzzle of autism: simultagnosia. A syndrome which occurs in adults, who have representations of objects and relations, self, movement , and perceptual world fully developed. When I went into it years ago I found Balint Syndrome in particular very telling. In autism the damage occurs before those representations develop. I think that the idea of autism as «develpmental agnosia» could be very useful.
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I agree completely with you Paul. There are many characteristics of the condition that serve to handicap the individual. In many cases, they are not readily recognized by either patients or even physicians.
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Yes for example Donna Williams and I share meaning deafness, language processing disorders, visual perception disorders, body disconnection, brain injury, hemiplegia, learning difficulties we differ in autoimmune disorders, gut/metabolic disorders collagen disorders, dietary disabilities.
Although both our families have a history of cancer. We shared certain personality types being solitary and idiosyncratic. Our personal upbringing and environment was different too and had differing and similar mental health disorders, we shared a liking for music and art.
No two people on the spectrum are the same.
http://blog.donnawilliams.net/2012/09/09/differences-between-aspergers-and-autism-fruit-salads/
https://www.donnawilliams.net/index.php?id=diagnosis
https://sites.google.com/site/paulisaacscouk/home/about-me/fruit-salad
It is my wish that people read Polly’s blogs and books about the mechanics of Autism she empowered so many. 🙂
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Manuel,what I find so frustrating is the lack of awareness,among doctors,of the medical and scientific advances in the field of autism.I know there are many parents of autistic children who agree with me.
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Yes, my psychiatrist has to go by the book when discussing it. But at least he recognizes it as a disorder despite not being willing to question what we know, he doesn’t recognize the existence of mechanisms, believing it’s just an early screw up despite testing showed I had no early brain overgrowth which he assumed is what autism is, the brain just overgrows too fast and a person ends up autistic with nothing else in adulthood, no abnormal gene expression, mechanisms, neuropathology, no subtypes, or biological/biomedical involvement. Whoops, I just developed wrong cuz my brain got too big and thats the end of it!
But he is still a great improvement. My older one had neurodiversity leanings and thought I could be a scientist if I tried hard enough with «systemizing» or something Baron-Cohen touted. I kept getting more depressed and anxious, he refused to prescribe me any adhd medication (another condition I have) since he thought it would make me agitated and crazy. My current one did, and guess what? I am quite calm, far less agitated and sleep very well while using sizeable doses of «stimulants».
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I don´t think that auism is a God´s punishment, and I don´t think that repetitive movements are a trait of personality. Is a bad idea take the opinion of a few persons and try to extrapolate it to a numerous collective of people. Is a bad idea, anyway, take seriously the opinions expressed in a furious discussion on internet.
Believe me, I was a genuine expert in these type of no-sense discussions… XD
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If autism is a God’s blessing or a God’s punishment, it is something between the individual and his/her God. And if there is an exampkle to show that science should not meddle with the intimacies of personal religion that is autism.
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I think that everybody has the right to believe what they want, and has the obligation to respect for other´s ideas. But science is looking for «Tht Truth», and sometimes it only means another type of faith. Perhaps the doubt is a better muse for true scientists.
By the way, I like very much yor idea of autism as “develpmental agnosia”. Is an interesting concept, but it only explains language difficulties, included non-verbal expressions (they are another way of language). But this idea don´t explain the communication difficulties altogether and the world´s isolation associated to this pathology. I think that there are a sort of «perceptive overexposure» in addition, and some sensory integration deficiencies (very possibly connected with simultagnosia syndrome you are commenting on).
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Well if I remember correctly it was Freud first in his studies of aphasia who differentiate agnosia, Others like Luria took the subject up and describe what they saw.
What I read in neuropsychology books years ago, perhaps things have changed, was that there were various forms of agnosia which cosisted in NOT BEING ABLE TO IDENTIFY OBJETCS FOR THEIR USE, it might be accompanied by aphasias or not but the issue is that although the agnosic knew the word he did not know nits meaning, its use. More complex forms were difficulties in intersensory integration; slowness in understanding pointing and difficulties in moving the gaze to the periphery of the visulal field;very poor understanding of whole pictures but good of details of such pictures; narrowing of the affective field; problems in maintaining attentiion over more than one object; problems of reading faces….
One has to bear in mind that the disorder is described in adults who were previously normal and had object representations, associations and integration normal, and had had a stroke or some brain trauma.
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It´s a complete description of the concept, wonderful!
Sorry Mariano, I used the general description of agnosia as «inability to recognize the informations coming by senses, particulry, the view sense». I associated it with language development, but your explanation seems much more appropiate.
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Pingback: A Reply to the User and Neurodiversity advocate”autistinquisitor” – pragmaticskepticism·
It is highly unlikely that those swept into neurodiversity by manipulative victimization would NOT want people on the spectrum to enjoy functioning mitochondria, protein folding in the endoplasmic reticulum, and properly working golgi systems to allow proper cellular detoxification. To deny that vaccines and other sources of immuno- and neurotoxins are just fine for a genetically at-risk group is the real cruelty. https://www.omicsonline.org/peer-reviewed/autism-is-an-acquired-cellular-detoxification-deficiency-syndrome-with-heterogeneous-genetic-predispositionp-99314.html
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You may have encountered some more extreme neurodiversity advocates- especially perhaps folks who are survivors of abuse both by parents/caretakers and professionals, most of us definitely want help & interventions for medical problems, emotional distress, self-injurious behavior. I have seizures myself and serious anxiety issues those things are definitely not blessings! The biggest thing many of us advocate for is against compliance training and the training that focuses on blending in and suppressing non-harmful traits of autism that may be coping mechanisms. Rather we want friendlier environments. We also want research that benefits people with autism and the concerns we have, many adults who go undiagnosed end up homeless, in prison, struggling with substance abuse, employment, in abusive relationships and so forth. A child or adult who has a severe type of autism that can’t live with out support at least has their disability recognized. Being ambiguously «not disabled enough» to be recognized and get support but too disabled to cope is a serious catch-22. I most certainly want to work with parents of children (or grown children) who need more support, not against them!
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You are welcome to write a blog on the subject. I agree with the ideas, and realities that you described.
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