Why I don’t like the word Spectrum in Autism Spectrum Disorder

I really think that Autism Spectrum Disorder is an unfortunate name, which doesn’t really describe autistic people well at all. Today I turn my laser sights to the “Spectrum” in Autism Spectrum Disorder.

At first, Spectrum seems like it’s a cool thing to say. It seems like it’s including a whole bunch of different people. It sounds like it’s celebrating the diversity of folks with autism. One of the earliest things I heard about autism was, “When you’ve met one person with Asperger’s, you’ve met one person with Asperger’s.” This somewhat cryptic phrase means that you can’t really extrapolate anything about everyone with Asperger’s by just your experience with one person with Asperger’s. At first, the spectrum name seems inclusive and welcoming. Spectrum was popularized by lumping a ton of different things in with autism–Rhett’s Syndrome, Asperger’s Syndrome, PDD-NOS, childhood disintegrative disorder, and regular autism.

But what does spectrum really mean?

A spectrum is an arrangement of things that are differentiated by just one variable.

Take for example the electromagnetic spectrum. All of the following are types of light (or electromagnetic radiation, to be precise), that are separated by just the variable of wavelength: gamma rays, x-rays, ultraviolet light, visible light, infrared, microwaves, television waves, and radio waves. And even though each of these lights acts really differently, they’re really just the same thing, and the only thing that’s different among them is the variable of wavelength. For example, build something that emits tons of radio waves, and then fly toward it approaching the speed of light which will compress the variable of wavelength, and then those nice gentle radio waves will turn into fierce gamma rays, and then you’ll either be fried or turned into the Incredible Hulk.

My two points with this are that everything on a spectrum is really the same thing, and that there is only one variable that separates everything on a spectrum.

Then what is the variable that the Autism Spectrum is based on?

A clue to this variable are the phrases high-functioning and low-functioning that are used in association with autism. What do these phrases really mean in everyday use? What I’ve seen in common usage is that high functioning means that someone can pass for a neurotypical person at times, and low functioning means that the autistic person couldn’t ever pass for a neurotypical person.

I also realized that nonverbal is often synonymous with low functioning, and verbal and sociable is often synonymous with high functioning.

That’s my realization about what this illusive Autism Spectrum Disorder variable is, and this variable is really just a misnomer. The spectrum variable in Autism Spectrum Disorder currently just means how well an autistic person can verbally communicate. Low verbal communication means low functioning, or on the low side of the spectrum, and high verbal communication, including social interactions, means high functioning, or on the high side of the spectrum.

This makes a tiny bit of sense if you compare nonverbal people to the ultra-intense gamma rays of the electromagnetic spectrum, as many nonverbal people have ultra-intense thoughts and focus.

But, as someone who was nonverbal for a few years, I really don’t like this oversimplification.

I don’t think that we can simplify autism down to just one variable. I might like the acronym ASD more if the S stood for Spectra or Spectrums, but trying to simplify autism down to just one variable is way too much of an oversimplification.

My prediction is that when we finally understand autism, in maybe 20 or 30 years, then we’ll be able to accurately model autism with perhaps 4 or 5 variables. But, it will definitely be more than just one, and there will definitely be more than just one spectrum to autism.

Breaking into a group that I’m already part of

I found a cool group, Aspies For Freedom. I wanted to really jump into writing about autism, so I posted my previous post, The upcoming epidemic of autism, to one of AFF’s message boards, asking for feedback.

I felt like I had been thrown in the fire. Four people responded, three negatively, and one positively. After reminding myself that this is exactly what I wanted, and licking my wounds, I came up with some rules for my book and blog to make them AFF-friendly:

  • No sarcasm. Actually, my real rule is more specific, in that if I read through one of my posts or chapters literally, then it still has a meaning that I like.
  • When giving autistic examples, only give them about me. I gave an example from the Big Bang Theory. What I should have done is give an example from my life. You can’t argue with something that I personally experienced, but you can easily argue with a cartoonized stereotype.
  • My book needs to be about me. This was hard for me to realize, because I’m not a genius. I’m just writing about geniuses. But I realized that because so much is unknown about autism, that really all I have to offer the world is my experience with it, and interviews that I do with other people about it. So, here’s my working first line of my book: “If we are really honest with ourselves, nobody really knows anything about autism.”
  • Autism versus autistic. This is a pretty heated debate, so if you use either word, use it carefully.
  • Don’t be a “curebie.” There’s a whole lexicon of terms that the autistic community has developed. The most important one is probably curebie. It’s a very derisive term toward someone who wants to find a cure for autism. What’s wrong with curing stuff? Usually nothing, if the person wants to be cured. If you ask someone with autism if they want you to rewire their brains, then almost everyone will say no. So, there’s something really ethically wrong with forcing drugs on someone who doesn’t want them. It would be bad, just like if there was a pill that people could take to turn you from having dark skin to having caucasian skin, or vice versa, and then some government started forcing people to take the pill.
  • I don’t really know much about drugs. Alcohol is the only drug that I’ve tried, so I should probably stick to what I know.

I was going to re-write my blog, and make it AFF-friendly, but the more I think about it, the more I think that skyblue1 might be right with “The first line on your page. No it is not compatible with the viewpoints of AFF as a whole,” and I should just give up on rewriting it.

Plus, besides sanitizing what I thought was a witty satire, I still have tons more things to say.

The upcoming epidemic of autism and the drug that will “cure” it

Reports of autism cases per 1,000 children gre...

Reports of autism cases per 1,000 children grew dramatically in the US from 1996 to 2007. It is unknown how much, if any, growth came from changes in autism’s prevalence. (Photo credit: Wikipedia)

I think about the future a lot. For the past ten years, I’ve been watching various disorders to try to figure out what makes one disorder popular and overdiagnosed, and another disorder unpopular and almost not diagnosed at all.

Autism right now is pretty popular, but I predict that within a few years, autism diagnoses will skyrocket even more than they already have. Why? Because right now there are no good drugs for autism, but in the near future, there will be.

But first, some statistics. The Center for Disease Control said earlier this year that one in 50 people has autism. Before this, the numbers were 1 in 88, and before that, it was just 1 in 1,000. The DSM-V rolls Asperger’s in with autism, which means these numbers will increase even more. Personally, I think that about one in twenty people that I know have some kind of autistic-like characteristics. But, I really don’t think that autism is overdiagnosed yet. Why? Because there are very few benefits for the layperson to being diagnosed with autism. Once you’re diagnosed with autism, you might get a little funding for therapy, be able to relate to some zany smart characters on TV shows, and have an excuse to try a gluten-free diet. But, none of those are really very exciting at all, and so there’s no motivation for someone without autism to get diagnosed with autism.

Contrast autism with ADHD. If you’re diagnosed with ADHD, there are some miraculous drugs that can help relieve your ADHD symptoms, and from what I’ve heard, they make non-ADHDers feel really good, too.

Think about the effects of a drug that would “cure” autism. What are the things about autism that someone would want to “cure”? I can think of three.

  1. Going from just living inside your head to being very open and talkative.
  2. Going from not being tuned into the emotional undercurrent in the room, to being very tied into the emotions of the people in the room.
  3. Quieting your brain so that you no longer need to stim.

From what I’ve heard about Ecstasy, it does a lot of this, but the drug I’m picturing would be much more powerful, in that it would make a person hypersensitive to other people’s emotions so much so that it would make a neurotypical person seem psychic. Imagine the good feelings of Ecstasy, but with a truly shared connection to the people around you. Also imagine the anti-nervousness effects of alcohol, but with enhanced clarity and fluidity of speech, instead of slurred speech. The drug that would “cure” autism would be a near-perfect drug.

People would flush their Ritalin down the toilet on the way out the door to beg their doctor to diagnose them with autism. At that point, autism will really be overdiagnosed.

As a disclaimer: I advocate a drug-free approach to autism, and I think any talk of curing autism with drugs is silly. I’ve also never tried Ecstasy or Ritalin, so my drug descriptions may be a little off.

A different approach to autism

I’m writing a book called Autism and Genius: How to raise the next Einstein.

I’ve noticed that one of the scariest things that can happen to a parent is to have one of their kids diagnosed with something like autism. Autism is confusing because nobody knows what causes it, and if we’re honest with ourselves, we still really don’t know if anything that we’re doing is helping, hurting, or doing nothing.

That’s where this book will come in. My goal is to highlight the things that successful parents do with their autistic kids. If you’d like me to interview you, then please let me know. If you’d like to publish a guest post, then let me know that, too. I need help with my book, and a lot of it. It won’t be possible without you.

You won’t see the word “disorder” in my book, besides once when I explain what i think of “ASD.” And, that one explanation will be the only acronym that I use in my book, too.

I almost definitely have some form of autism, even though I’m not going to get diagnosed, and I’ll make a future post soon explaining that, as one of my next few posts. I think that I’m in a unique position to tell the story of autism and genius, as one of my autistic obsessions is social interactions.

My theories are largely strengths based. I spent the first 3/4ths of my life trying to get rid of my weaknesses, and the last few years trying to figure out how to unlearn all of that, and how to utilize my strengths instead. I think I’ve figured out some really cool things with this process that I want to share with the book, and I expect my theories to be reinforced as I interview the parents of autistic kids.

-Joseph Dewey