The Autism Spectrum is Useless: Here's why...

[Beguiling Orbit]

This thread reminds me of my freshman year philosophy course. On the first day of class, the professor came in late (for dramatic effect, I later realized), walked to the front of the room, turned around and said, "by the time class ends today, I'm going to prove to you that you don't exist." We were quite skeptical about his assertion. I even thought, "what a crackpot!" Still, he was right. After class, not one of us was certain that we existed.

Like I did in that class, I came into this thread with a high degree of skepticism about the OP's assertion. Unlike the class, I fully expect — based on the arguments I've been presented thus far — that I will not be convinced by the end of it that the "autism spectrum is BS" or "a load of horse crap." Try again.

 

[VioletHaze_03]

The idea of a spectrum makes more sense than having one diagnosis. Autism is an individual diagnosis, every case needs to be handled differently. Making one diagnosis can't account for every symptom a person may experience. This applies to things other than conditions like ASD. take depression, for instance. If someone is clinically depressed, to the point of considering suicide, they will function completely differently from a mildly depressed patient, and giving the two the same treatment could be extremely dangerous, even fatal. The spectrum is needed so that therapy can be adapted to a person, and goals can be specific to them. If you just used a cookie cutter diagnosis, there could be serious flaws in the system, even worse than there are now. Imagine putting a highfunctioning, almost nuerotypical person in a group home because that would be the "cookie cutter treatment." For this cookie cutter diagnosis. Or maybe you'd have the opposite, a low-functioning person left on their own because their diagnosis wasn't clearly defined. Other than that, a lot of people don't like the use of the word "autism" anyway. It's so heavily stigmatized among nts, and i think changing the diagnosis to just "autism" would make that stigma even more unbearable than it already is.

 

[CWard12213]

Everyone is different no two autistic people are alike.

EVERYONE DIAGNOSED WITH AUTISM IS DIFFERENT

These points are the entire basis upon which the diagnosis of ASD was restructured as a spectrum. If it were not a spectrum it would be a linear yes/no diagnosis with a rigidly defined cutoff in which the same terminology could be used to describe individuals with virtually no common traits.

 

[ANTHONY LAF]

I have no very little faith in shrinks who see you maybe once a week. Putting someone on a spectrum by a shrink is crap and a spectrum is just an easy way of looking at autism.

Putting labels on autistic people is stupid. It's for nt individuals that find putting people into groups easier to understand.

I had a sister that was diagnosed as severely autistic on the spectrum as a little kid but doesnt exhibit ANY signs of autism nowadays.

 

[VioletHaze_03]

I have no very little faith in shrinks who see you maybe once a week. Putting someone on a spectrum by a shrink is BS and a spectrum is just an easy way of looking at autism.

hmmmmm, but what about self diagnosis? Do you think individuals should be allowed to confirm thier diagnosis, so they may be able to get some help? That's the point of the ASD diagnosis- people getting help so they can live with their condition. And by the way, autism never "goes away" like you indicated in your sister's case. Yes, it can become less prominent as one gets older, but it can never be fully "resolved" You just may not notice these traits anymore, or they may be so mild that it doesn't negatively influence her life. Also, i welcome nts who want to understand us. If they can figure out ways of learning about different degrees of and the success of those with disabilities, It may just end the rampant stigma we face now.

 

[LucyPurrs]

I have no very little faith in shrinks who see you maybe once a week. Putting someone on a spectrum by a shrink is BS and a spectrum is just an easy way of looking at autism.

Putting labels on autistic people is stupid. It's for nt individuals that find putting people into groups easier to understand.

I had a sister that was diagnosed as severely autistic on the spectrum as a little kid but doesnt exhibit ANY signs of autism nowadays.

I had a sister that was diagnosed as severely autistic on the spectrum as a little kid but doesnt exhibit ANY signs of autism nowadays.

Is it possible that your sister was misdiagnosed to begin with? Maybe there were other reasons for her behavior and presentation back then.

 

[pjcnet]

It is wrong to classify anyone on a "spectrum" I understand autism exists but putting people on a spectrum is inhuman and stupid. Everyone is different no two autistic people are alike. Classify people as who THEY are not where they stand on some BS spectrum.

EVERYONE DIAGNOSED WITH AUTISM IS DIFFERENT

I agree that everyone is different including everyone with autism, but the word "spectrum" actually supports this fact since a spectrum covers a large range where everyone can be at their own unique position. There are people like my brothers who can definitely be described as being on the lower end of the autistic spectrum however since they can't count, tell the time, read/write or do most things that a normal person would be-able to do, you could also describe most people here as being on the higher end of the autistic spectrum, but this still doesn't mean they're all the same as even the lower or higher end has room for a lot of variation.

 

[CWard12213]

Without labels there are no services. The purpose of an ASD diagnosis is not for segregation or judgment, it is to provide assistance. I'm assuming by "shrink" you mean psychologist? Who do you believe would be more qualified to make that diagnosis than someone with a doctorate in clinical psychology?

Also, if someone sees you once a week they are seeing you for therapy, not assessment. Psychological assessment usually involves hours of testing and observations.

ANY behavioral health diagnosis is fluid. We can't look inside of someone and see ASD, or depression, or ADHD. Diagnoses are based on observed symptoms, which change. Maybe the reason your sister no longer meets criteria for ASD is because she received a diagnosis of ASD and treatment for ASD. None of which would have happened without the assessment or the label that you are so against.

 

[pjcnet]

Without labels there are no services. The purpose of an ASD diagnosis is not for segregation or judgment, it is to provide assistance. I'm assuming by "shrink" you mean psychologist? Who do you believe would be more qualified to make that diagnosis than someone with a doctorate in clinical psychology?

An autistic person with a doctorate in clinical psychology.

ANY behavioral health diagnosis is fluid. We can't look inside of someone and see ASD, or depression, or ADHD. Diagnoses are based on observed symptoms, which change. Maybe the reason your sister no longer meets criteria for ASD is because she received a diagnosis of ASD and treatment for ASD. None of which would have happened without the assessment or the label that you are so against.

True, although genetic testing might allow us to effectively look inside someone and diagnose ASD for at least some people in future even if there's some forms of ASD where people don't carry the gene. Sorry to nit pick lol!

@ANTHONY LAF's sister has probably become better at emulating being an NT and the treatment may have helped achieve this so I agree, but if this is the case she's still got ASD and it is worrying because many people who have ASD may never be diagnosed because they have learnt to emulate being an NT so well, but emulating uses a lot more mental energy and even though it may appear the same, it is not the same as being NT. That said I was thought to be on the low functioning end of the autistic spectrum when I was a very young child (well severely autistic back then), but unlike both my brothers I started improving and I started speaking better + much more as I got older, I still kept numerous autistic traits however and remained on the higher functioning end of the autistic spectrum. Perhaps his sister was similar and is really on the higher functioning end of the spectrum, but is emulating being an NT very well. The only other alternative is the original diagnosis was false and she was never really on the autistic spectrum to start with, but I think this is less likely. One thing I can certainly rule out is she had ASD and is now "cured" as there is definitely no true "cure" (that's is if you call it a "cure" because autism isn't really a disease).

 

[CWard12213]

True, although genetic testing might allow us to effectively look inside someone and diagnose ASD for at least some people in future even if there's some forms of ASD where people don't carry the gene. Sorry to nit pick lol!

Yes, I do believe there will come a day when we are able to do this. I should have said CURRENTLY there is no way to look inside a person and see ASD. We will probably get there some day, and then have to jump the additional hurdle of convincing insurance companies that paying for genetic testing vs psychodiagnostic testing is worth the drastically increased expense. That part may never happen to be honest.

 

[kay]

While I don't quite feel the spectrum is crap I do agree as far as to say it is a crude way to describe something that is fairly complex and confusing. Looking at the definition of spectrum:
spec·trum
ˈspektrəm/
noun
noun: spectrum; plural noun: spectra; plural noun: spectrums

1. 
   
2. 1.
   a band of colors, as seen in a rainbow, produced by separation of the components of light by their different degrees of refraction according to wavelength.
   • the entire range of wavelengths of electromagnetic radiation.
     noun: the spectrum
   • an image or distribution of components of any electromagnetic radiation arranged in a progressive series according to wavelength.
   • an image or distribution of components of sound, particles, etc., arranged according to such characteristics as frequency, charge, and energy.
3. 2.
   used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points.
   "the left or the right of the political spectrum"

I understand perhaps the OP's point, I hope. And that's why I really do like to look at it as a recipe instead. I am not one place on a spectrum, I am a bit of this, and a little more of that, and just a dash of the other. To me support needed could be much better accessed using a long checklist of traits with measurements and types of those. In cooking terms there might be paprika is called for but you would also need to say smoked or Hungarian and a teaspoon or a dash. In ASD it could be mutism, selective, partial, or non verbal, ect... and then a way to rate it further to indicate how much help the individual might need. One number perhaps indicating a device of some sort to help, another person pen and paper. Sorry, haven't taken the time to fully think all this out but by going trait by trait a person with even one trait could get support and the specific support they need. As it is now you need so many traits to get support at all and then it's rarely targeted right. Sorry if this is still in a jumbled state. I do partially agree with the OP though and that is to the best of my current ability to explain why. I woke up in quite a tax induced funk this morning.

 

[LucyPurrs]

While I don't quite feel the spectrum is crap I do agree as far as to say it is a crude way to describe something that is fairly complex and confusing. Looking at the definition of spectrum:
spec·trum
ˈspektrəm/
noun
noun: spectrum; plural noun: spectra; plural noun: spectrums

1. 
   
2. 1.
   a band of colors, as seen in a rainbow, produced by separation of the components of light by their different degrees of refraction according to wavelength.
   • the entire range of wavelengths of electromagnetic radiation.
     noun: the spectrum
   • an image or distribution of components of any electromagnetic radiation arranged in a progressive series according to wavelength.
   • an image or distribution of components of sound, particles, etc., arranged according to such characteristics as frequency, charge, and energy.
3. 2.
   used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points.
   "the left or the right of the political spectrum"

I understand perhaps the OP's point, I hope. And that's why I really do like to look at it as a recipe instead. I am not one place on a spectrum, I am a bit of this, and a little more of that, and just a dash of the other. To me support needed could be much better accessed using a long checklist of traits with measurements and types of those. In cooking terms there might be paprika is called for but you would also need to say smoked or Hungarian and a teaspoon or a dash. In ASD it could be mutism, selective, partial, or non verbal, ect... and then a way to rate it further to indicate how much help the individual might need. One number perhaps indicating a device of some sort to help, another person pen and paper. Sorry, haven't taken the time to fully think all this out but by going trait by trait a person with even one trait could get support and the specific support they need. As it is now you need so many traits to get support at all and then it's rarely targeted right. Sorry if this is still in a jumbled state. I do partially agree with the OP though and that is to the best of my current ability to explain why. I woke up in quite a tax induced funk this morning.

Kay, I love the creative way you are using a cake recipe in place of spectrum . That's really brilliant in my book and I sure never would have thought of something that original.

 

[Ylva]

Everyone diagnosed with anything are different. You could pick a condition so rare three people on the planet have it, and they will still all be different. Even if they are identical triplets.

 

[kay]

Kay, I love the creative way you are using a cake recipe in place of spectrum . That's really brilliant in my book and I sure never would have thought of something that original.

Thanks, but I think it comes from me always wanting cake and other sweets.

 

[pjcnet]

The word "spectrum" is fairly reasonable and it is possible to imagine everyone as having their own unique position, but I do agree that it could be a lot better to further make the point that each and every autistic person is truly unique.

A fingerprint is as good as unique, so why not use this word to describe each person's unique autistic characteristics rather than just state where they roughly are on the autistic spectrum? In other words every autistic person could be described as having their own autistic fingerprint.

It wouldn't be perfect, but in order to conform to the current methods of recording information in a database, each person's autistic fingerprint would effectively be a record and could then be further split down into various measurements (numeric fields) that describe each of the main characteristics and abilities of the autistic person and effectively each numeric value would be a spectrum on it's own. If each value was an integer in the range of say 0 to 100, then even if there was just 5 measurements there would be a total of 10,000,000,000 (10 US Billion) possible combinations which is currently higher than the world's entire human population where autistic people are only a small fraction, although many combinations could never happen (E.g. someone having zero on everything) or it would make them an NT, meaning the number of likely unique combinations would probably be roughly halved (5 US Billion) or even perhaps quartered (2.5 US Billion), but there could be a lot more measurements, for instance with 10 measurements there would be a total of 100,000,000,000,000,000,000 (100 US Quintillion) possible combinations and even if this was quartered there would still be 25,000,000,000,000,000,000 (25 US Quintillion) possible combinations. With such a huge number of combinations it would be extremely unlikely that anyone would end up having exactly the same autistic fingerprint and it would therefore be truly unique for every autistic individual. In addition to numerical measurements there could also be text fields, one could for instance list co-morbid conditions that have been separately diagnosed because they're particularly prevalent in that particular person so they could be read at a glance, another could be about special interests and there could be even more, then at the end there could be a comments field for any further information not covered.

It's a damn shame something similar to the above will most probably never ever happen, especially if virtually every so called "expert" and government adviser on autism continues to be an NT who obviously can't possibly ever understand autism like we can. Even if something like this was implemented it would probably be done very badly.

Edit:
A fairly simplistic type of autistic fingerprint is displayed even when viewing the results of the Aspie Quiz and different parameters/values are displayed on a type of graph/chart, but this could be further built and improved upon (obviously even though the Aspie Quiz is a useful resource it's not an official diagnosis).

Here is a typical example result:

 

[Forgotten Aspie]

Jargon - or terms used within a profession to describe subtleties the lay person can not even differentiate without more in depth study are necessary. I don't want a surgeon saying "hey hand me that thingy so I can cut this what-cha-ma-call- it off... I don't want psychologists/ psychiatrists using general term either. the classification "Autism Spectrum Disorder" is their latest attempt to "herd the cats" of autism. This attempt will be plagued with problems like every attempt they have made before. But it is their attempt to improve on diagnosing a poorly understood condition that people have.

I personally want to know the specifics about why I'm having troubles. It has been a HUGE relief just knowing I'm not crazy... there is something different about me.. and it does not make me a broken or bad person.. it is something I need to become aware of, and THEN I can take control of my life instead of fooling myself that I can adopt a "better behavior" and actually change WHO I am.

I lived a life trying to be what I am not...instead of being the best of who I am. It is a very subtle difference in behavior but psychologically, and emotionally, it makes all the difference in the world when you live i harmony with WHO you are and not who you think you should be.

 

[CyborgSpaceKitten]

I'm sorry, but I really don't understand how having an autism spectrum is useless. If you are autistic, you're autistic. There are just varying degrees of autistic. There are also people who are neurotypical. They DON'T fall on the spectrum. I'm not quite sure what you're getting at. Are you saying that there is no such thing as being autistic?!

 

[CyborgSpaceKitten]

It is wrong to classify anyone on a "spectrum" I understand autism exists but putting people on a spectrum is inhuman and stupid. Everyone is different no two autistic people are alike. Classify people as who THEY are not where they stand on some BS spectrum.

EVERYONE DIAGNOSED WITH AUTISM IS DIFFERENT

The POINT of the spectrum is to signify that we are all different. That's why it's called the spectrum. The spectrum of different colors has all sorts of varying degrees of visible colors...that's what it's saying about autistic people.... that we come in all different shades

 

[Desiree W]

The fact that everyone is different is a pretty good reason to have the spectrum in my honest opinion.

 

[nowwhat]

EVERYONE IS DIFFERENT, putting people on spectrum is useless

Do you actually know what the word "spectrum" means in this context?