Philosophy Discussion Forums | A Humans-Only Club for Open-Minded Discussion & Debate

[Simplyhuman]

I am a father of 6. However, 3 of my boys have been diagnosed with autism. They have all been diagnosed multiple times by multiple doctors. Mainly because every time the school or insurance company is asked to provide services, they need to retest in order to justify spending any amount of money. Every time they leave with a diagnosis of aspergers or autism, which are now considered the same thing.

However, all 3 boys are completely different. They have their own ways about them.

One is a true genius, but he can't stand writing with a pencil. The scratching of the pencil on paper drives him into pure rage. However, the school won't let him write with a pen. So he turns in blank paperwork every day. Yet time and time again the administration says, "he is above grade level and could skip a grade or two... If only he would turn in class work."

Another is almost non verbal. Silent for 90% of the day. He usually communicates by pretending to be a cat and "meowing" in certain tones to get his point across. (Or hissing to show he's upset)

Another boy is never quiet. Constantly making noises, he can't stop himself from making some sort of noise at all times.

There are thousands of ways they are completely different from one another. I won't rant further on that. But with every one of them being so different, how can they have the same diagnosis? The autism spectrum is so vast and huge that it seems almost anyone could qualify as having an autism spectrum disorder. In their little autism community groups, every child is different in their own way. This has led me to the following conclusion:

Autism spectrum disorder is not real. It is an umbrella term and a way for to professionals to attach a diagnosis code to insurance paperwork. The truth is all of these kids need some assistance to make it in today's society, but we don't yet know how or why. To me the word autism is a throw away diagnosis. It means that the individual may not react in a neuro-typical way to situations. But how and why, are unique to each individual.

Partly a hoax, partly the fact that medical science needs a name for behaviors that they don't yet fully understand.

[Sy Borg]

Anything labelled a "disorder" means that a person needs help. Neurological differences do not imply a disorder; it's the need for extra assistance that warrants a diagnosis of a disorder. So, while the criteria are broad and everyone could be said to have "autistic" traits to some extent, it is not true that "anyone could qualify". You must have a problem that needs professional help.

The medical profession is just trying to analyse the situation for patients that require help and assess commonalities so, yes, they want to classify behavioural differences and, yes, their efforts in this are clearly developmental. So it makes more sense for now to focus on practicalities rather than labels IMO: Does the person need help? What is the problem? What kind of help do they want/need?

Good luck to and with your kids, SimplyHuman. They have a staunch protector, so that's in their favour.

[The Beast]

My take. I was interested in animal noises myself. There is a big market out there. Of the available free ones I collected a few on wolves. “In the darkness of the night the pack was hunting”. The cat wants to hunt as well. Classic sound disturbances? The genius is a prisoner of the emotional brain. Oh yes: “the blank slate” and the “restless motion”. They are getting ready to hunt. They are looking at you and you said good things. Did you read? You know what is best as long as you are close. You are going to need a plan.
Children do not think like adults. They think with the flow of emotions and you seem to notice all of them. To the restless motion you can only be a rock. To the animal an alpha animal and to the blank slate a teacher. He is ready to learn how to think. There is no way he can be the teacher. Maybe he can be the king and you the wise man. What can you get from the system? Whatever you want as long as they do not have to work. Everyone learns that. The pattern is there and where there is a pattern there is a history. Maybe the story of Helen Keller will inspire you.

[Grunth]

'Disorder' isn't necessarily inappropriate or negative as a term. After all, what is 'order' as it relates to society? Order in society is merely expected norms. 'Order', therefore expected behaviors for members of a society, are operational modes within a tight or limited spectrum (as deemed by a culture).
Autism appears to occupy a wider spectrum of behaviors both inside AND outside the limitation regarded as 'orderly' and/or 'normality'. A general civilized society, in effect, is required to make comfortable the lives of those who occupy this wider spectrum, these 'outsiders', by keeping them safe from general society's usually limited understanding of those who experience and interpret the cultural life differently than the rest of us have come to habitually expect.
The more habitual we are in our order (our tendencies, the way we think) the more confronting the habitual operation of others. Consequently, such others are often deemed as problematic. However, the challenges the autistic present to the rest of us 'ordered' folk are really opportunities for ourselves to inspect, be critical of, and learn to understand, our very own limitations and spectrum myopia. If we take the opportunity to more fully inspect ourselves in our relations with these 'others' the better it will be for both us, those inflicted with order, and the inflicted disordered.

By the way, I have one 'autistic' son and my own experience with ordered society, with respect of him, is as gatekeeper of the consequence that is the ignorance usually demonstrated by institutions whom, on paper, are supposedly assessors of needs (but which are often more a bureaucracy which tries to minimize his condition in order to monetarily balance some phantom book of theirs).

So I fought, and as victory I have made sure he receives, at least, financial state assistance. This goes some way towards compensating him for the ignorance of those who could have otherwise been his potential employers, had they been less ignorant as a consequence of some self-inspection, and for him to live a life relatively independent.

[Simplyhuman]

However, the challenges the autistic present to the rest of us 'ordered' folk are really opportunities for ourselves to inspect, be critical of, and learn to understand, our very own limitations and spectrum myopia. If we take the opportunity to more fully inspect ourselves in our relations with these 'others' the better it will be for both us, those inflicted with order, and the inflicted disordered.

I fully agree with this comment. Sure, there are key social issues that will require guidance and assistance where a 'typical' person should be able to thrive. But these disorderly individuals seem to be able to flourish in areas without being taught that would have some people baffled beyond belief. I try not to view it as a DIS-order, but more of a RE-order. Their brains work so differently than that of the majority. But also so differently than that of fellow autistic people... Some days I start to think that they are just simply more advanced forms of humans in an early developmental stage, and it's the "normal/typical" people that are the dead weight.

[Grunth]

. Their brains work so differently than that of the majority. But also so differently than that of fellow autistic people...

Sure, there will indeed be differences but 'autism' is probably still the neural condition they share. The link could be information or sensory overload (sensory sensitivity) they experience while their difference between each other is the individual forms of coping with and reacting to sensory overload. For example, the child that is sensitive therefore hates the scratch of pencil on paper is probably the most obvious for aligning with a sensory overload condition. Also, though, the child who is more silent but pretends he is a cat. Maybe the cat persona allows him to bring a focus to his own body or self (a meditation) rather than merely add himself to the noises other non-cats make which could just become more of a cacophony giving rise to feelings of confusion. For his socialization, possibly the more time he has with gentle and quiet communication. maybe only one on one, will help him slowly develop social communication skills. The third child who makes a lot of noise could be noisy in order to drown out the much noisier, for him, world.

Even for us 'normals' it is important, for our human development, that we become more acutely aware of our own bodies, our own sensations and, therefore, reactions to these sensations which manifest as behaviors. We cannot non-identify with the body we think we are (transcend ego) until we understand the processes of identification with body (ego).

-- Updated May 23rd, 2016, 2:21 pm to add the following --

I suggest you google 'information overload and autism' or 'sensory overload and autism'.

[Simplyhuman]

We are familiar with sensory and information overload. We have spent many years fighting to make sure that their sensory diet is kept in place and honored.

[Grunth]

Well, as i say, I think this is the common link between your 3 children. Their differences may be just their different reactions to the same condition thereby merely reflecting their different personalities.

[LuckyR]

I am a father of 6. However, 3 of my boys have been diagnosed with autism. They have all been diagnosed multiple times by multiple doctors. Mainly because every time the school or insurance company is asked to provide services, they need to retest in order to justify spending any amount of money. Every time they leave with a diagnosis of aspergers or autism, which are now considered the same thing.

However, all 3 boys are completely different. They have their own ways about them.

One is a true genius, but he can't stand writing with a pencil. The scratching of the pencil on paper drives him into pure rage. However, the school won't let him write with a pen. So he turns in blank paperwork every day. Yet time and time again the administration says, "he is above grade level and could skip a grade or two... If only he would turn in class work."

Another is almost non verbal. Silent for 90% of the day. He usually communicates by pretending to be a cat and "meowing" in certain tones to get his point across. (Or hissing to show he's upset)

Another boy is never quiet. Constantly making noises, he can't stop himself from making some sort of noise at all times.

There are thousands of ways they are completely different from one another. I won't rant further on that. But with every one of them being so different, how can they have the same diagnosis? The autism spectrum is so vast and huge that it seems almost anyone could qualify as having an autism spectrum disorder. In their little autism community groups, every child is different in their own way. This has led me to the following conclusion:

Autism spectrum disorder is not real. It is an umbrella term and a way for to professionals to attach a diagnosis code to insurance paperwork. The truth is all of these kids need some assistance to make it in today's society, but we don't yet know how or why. To me the word autism is a throw away diagnosis. It means that the individual may not react in a neuro-typical way to situations. But how and why, are unique to each individual.

Partly a hoax, partly the fact that medical science needs a name for behaviors that they don't yet fully understand.

Well, yes and no. The label is just a label, it is not real in and of itself. The individuals with the label are correctly classified with the caveat as you implied, that Science doesn't know much about the mechanism of what brings about the constellation of the observable symptoms and traits. Though this, like all things scientific is on a timeline from no understanding to good understanding. This issue just happens to to currently not be very far along compared to other maladies. They'll get there eventually but the wheel grinds slowly.

The success of Medicine to understand the lower hanging fruit has made those with higher hanging disorders feel resentful and neglected. This is natural, if not an accurate description of how we got to this point.

[Sy Borg]

@Simplyhuman

For the record, I am technically a high functioning autistic person. I do not take meds, preferring self medication. I do consider my situation very real and I spent much of my life as an outsider or on the fringes. The problems of not picking up social cues, hypersensitivity and so forth are many, and my school life was tortuous, and I left without matriculating despite vocational guidance assessing my IQ as "well within in the top 10% compared with university graduates in NSW" (they didn't tell me the number, alas). My family at the time knew nothing of ADHD and I was just considered quirky, and my Catholic mother saw my struggle for sanity at school as character building (she didn't know any better and always did her best).

Autism spectrum disorder is painfully real IMO but, as with all challenges, some can be more readily overcome by oneself than others. I am not a fan of Ritalin or dex, which I found uncomfortable, but I understand that some gain benefit from them. I do think that focused work on particular behavioural issues could be of great benefit, and that would have been most helpful for me in my childhood and teens had today's psychological knowledge and understanding been available at the time.

I think hypersensitivity is at least one key to autism spectrum disorders. As far as I can tell it's common that people on the spectrum experience regular odd physical discomforts, and our efforts to alleviate these discomforts can strike others as strange behaviour. This was illustrated to me by an exceptionally moving documentary about a severely disabled autistic girl who could not communicate at all, who frequently fell into strange fits - scratching furiously at her arms, screaming, writhing, etc. Then, in her teens, it was found that she could communicate by very slowing typing.

As her eloquence grew, her parents were devastated to realise that they had so often treated their daughter as mindless, speaking about her in front of her as though she wasn't there. It turned out that, not only was she aware, she is extremely intelligent and outstandingly perceptive for her age. The blossoming of the girl's relationship with her parents was deeply moving.

Then I realised that my life has been a succession of fidgety discomforts, that I'd taken for granted. A very long way from the challenges of the girl in the documentary, or your children I expect, but significant to me. I just assumed that everyone felt those kinds of discomforts and I was just weak, too oversensitive and hyperactive. I used to marvel at how workmates could remain so still in training classes. For me it was a constant struggle to keep my fidgetiness within social norms, or at least not too outrageous. What I didn't appreciate was that these things are all about matters of degree. Everyone experiences various regular discomforts but not to the same degree.

It's a hard life, not being "normal", but I would not swap my mix of gifts and deficits for anyone else's, even though I can sometimes feel envious in moments of weakness. I suppose I think of it as a case of "swings and roundabouts".

[Simplyhuman]

Greta,

I too saw that documentary. It was very emotional for my wife and I as we saw so much of our one son in particular in that girl. Though, I myself, am not autistic, I am surrounded by those who are. I could never say "I know how it feels", because I only witness it as a parent and I am not in their heads. But I do imagine that my sons hardships are closely matched to yours. School is a big issue, we recently started home schooling. Partially because of the ignorance of their peers was torture for them. But the final straw was when the school removed their services, which took us years to accumulate.

We moved to a new house in a new school district. The new school brought in a school psychologist and determined that their multiple diagnosis by multiple doctors were all incorrect. They came to this decision for 3 boys in a matter of a few hours. Claiming that the one who is non verbal is just being difficult and defiant by giving them the 'silent treatment'. The one who can't keep quiet is just trying to disrupt class, just looking for attention. Ignorant comments on the report like, "When asked a question, the child is ignoring the psychologist" or "The child keeps changing the subject when prompted to respond to a question" and so on. And because the costs for services are paid for by the school, then the only diagnosis they have to honor is the one they give out themselves.

So in turn we lost vital services such as special transportation, 1 on 1 teachers aids, sensory breaks, ect.. So we are now attempting home school and it seems to be working very well, though it's only been a couple weeks. The director of home schooling in our area said it is a very common practice for the county that we moved to, and several complaints have been recently filed. We will be filing as well.

It is hard, it is confusing, and it's stressful. But like you said, I don't think they would trade their gifts and deficits either.

In my personal opinion, the spectrum is so vast that it cannot be properly defined as one umbrella diagnosis. My hopes are that eventually there will be categories or levels. That way any professional working with autistic children can hone in on what that individual's actual deficit. Too often I hear stories (or acquired stories of my own) of a professional saying they have tons of experience with autism, then turning around and saying "I've never seen this before". I think once the spectrum is broken down and segmented, assistance will be much more affective.

[Grunth]

In my personal opinion, the spectrum is so vast that it cannot be properly defined as one umbrella diagnosis. My hopes are that eventually there will be categories or levels. That way any professional working with autistic children can hone in on what that individual's actual deficit. Too often I hear stories (or acquired stories of my own) of a professional saying they have tons of experience with autism, then turning around and saying "I've never seen this before". I think once the spectrum is broken down and segmented, assistance will be much more affective.

The danger with further segmentation is that the medical academic becomes much like a bureaucrat. The fluidity of this and other conditions means that if each segment, aspects broken down through a process of segmentation, becomes relied on then it may just create situations whereby even more autistic people fall out of the general diagnosis. The umbrella term can, in many ways, be more useful. Given that children are usually quite individual, the better analyzers will be the parents who are the ones who spend the time with these kids.

It's like a person's race. Once 'human' (within any particular society) is broken down into race, it is then we get racism. A parent of a particular race may keep reinforcing to their child that they are that race in relation to other races. 'Races' that one's race is compared to is, by definition, another group of society made up by the breaking down of that group. In the process of comparison there is the inevitable introduction of ideas about one's own race and that of others. Therefore the fact that one is of a particular color becomes permeated with ideas about that color. Fact then becomes idea. Color then becomes an idea as to what that color should mean. When a fact begins to become ideas the fact gets lost. Ideas are not facts. The fact of a color is not a problem. It is the idea of a color that becomes a problem.

The fact of autism, once put through a process of breaking it down into further segments, will likely become ideas about each autistic person. However, each person or autistic person is far more fluid than that. They will flow, depending on circumstance, between one segment and another....never fully residing in one aspect. As aspects get bureaucratized then more and more people get left out of being under a necessary umbrella diagnosis or they get pitted this way and that within a medical bureaucracy. Bounced around but never settling.

[Sy Borg]

@Simplyhuman

Great move with the home schooling. No matter what the problem, it's always easier with the kind of caring support you and your partner are giving. The challenge, apart from time and resources, is creating a balance where the kids can have a chance to socialise (and be socialised) safely, and hopefully gain some instructions as to how to work through tricky social situations.

Commiserations about the school psychologist. That's luck. You just happened to get a quack. "Silent treatment" is clearly a retreat. A high-handed assessor with paranoia issues is hardly going to get results with timid. As for attention-seeking, I was accused of that. In truth, I'd wind up and that was it; I didn't have an "off switch". Still don't. When you have thoughts racing through your mind there can be a tendency to blurt them out before you forget. I think psychology and philosophy are useful tools for such a child. They have to be prepared to let some thoughts go, and not worry that they'll never remember it again. If they don't let most of their thoughts go into the ether then they will not be able to give others undivided attention.

Medicine, like all sciences, is a work in progress. The fact that dex and Ritalin don't agree with me, and many others, suggests there's more going on that we are not sure about. The spread of symptoms is also great. I personally find it odd to be in a category that includes those infinitely more serious deficits. It's akin to calling a twisted ankle a broken leg. Here is a list of symptoms, and I doubt too many would present more than half of [url]them: http://raisingchildren.net.au/articles/ ... ptoms.html[/url]. Very messy.

I also ponder the way society is restructuring, with ever more refined social expectations. It is much easier to be thought of as crazy or in need of help in today's hyper connected world, whereas such people were often affectionately thought of as "eccentric" back in the 60s and 70s. We are becoming incredibly fussy. Some people carry on as though they've been poisoned if served instant coffee. Even tap water is suspicious. Perrier please. In social interactions I find that the use of multi-syllable words are considered almost offensive in polite company, as though brute science spoils the delicate social ambiance. The fussiness drives me mad(der). You surely don't need to be on the spectrum for that, but it surely helps. Those on the spectrum tend to thrive with easygoing people who are not judgemental about difference.

Further, I think there's a matter of luck as to whether one lands in a suitable area, as evidenced by your kids' experiences with the psychologist at the new school. Maybe in a few years the quack will leave and be replaced by a genuine professional?

People on the spectrum are often natural specialists with particular points of focus, but they are often less able to organise, navigate and handle social and work politics. When it came to work, I thrived in data analysis and design work and floundered as a payroll clerk and legal secretary, positions that required organisation and political skills.

@Grunth

You raise legitimate points but what is the alternative to breaking down the diagnoses? It makes sense to open-mindedly determine the specific problems a child may be having in the first instance, be it class behaviour, social issues or learning issues. From there counselling, coaching and mentoring in the deficit areas would ideally be provided as a first line of treatment. However, if that approach doesn't help, what should be done then in lieu of a diagnosis, especially if particular patterns are apparent?

Maybe the meds are being used because the hours of work needed to help vulnerable children is too expensive?

[Burning ghost]

Everyone is somewhere on this spectrum.

Some people have more extreme behaviours than others, some struggle socially where others do not.

Terminology has changed from mental disease, mental disorder, brain disease to the current term brain disorder. What you have to consider here is that these physical brain defects are neither positive or negative only that they defect from what the majority of people have.

I would suggest finding a professional who either has some kind of autism or has kids/loved ones that do. I know from personal experience that some psychiatrists are utterly clueless and out of their depth in certain areas.

[Grunth]

You raise legitimate points but what is the alternative to breaking down the diagnoses? It makes sense to open-mindedly determine the specific problems a child may be having in the first instance, be it class behaviour, social issues or learning issues. From there counselling, coaching and mentoring in the deficit areas would ideally be provided as a first line of treatment. However, if that approach doesn't help, what should be done then in lieu of a diagnosis, especially if particular patterns are apparent?

Maybe the meds are being used because the hours of work needed to help vulnerable children is too expensive?

I disagree with the idea of categories of autism. Such categorization has not been achieved yet and there may well be good reason for this. After all, it isn't like cancer where it has different effects due to different areas and organs affected. Autism is diagnosed by behavior because there is only one organ involved. In effect autism is of the psyche. Due to being of the psyche, it (the person) will more usually respond or react to environment. If autism gets further broken up into various categories of autism then any environment change maybe of the institutional variety, rather than families finding ways of adaptation with some level of state support.

-- Updated May 27th, 2016, 8:17 pm to add the following --

Fortunately we have the internet and therefore less need for psychiatry. A psychiatrist for a diagnosis, but beyond that I would generally stay away from them.