I Have Nonverbal Autism. Here’s What I Want You to Know
themighty.com
themighty.com
http://www.tandfonline.com/doi/pdf/10.1080/17489539.2014.955...
Please elaborate! :-)
Edit: This seems adequately explained by another comment: https://news.ycombinator.com/item?id=9563887
Because she essentially has no voice, it's almost natural to talk about her as if she isn't there. As she's grown we've been better about it, but because she doesn't express emotion it's near impossible to imagine what she might be thinking or feeling.
I have several dreams a year where she speaks. I'd expect other parents do as well.
The strangest thing for me is to have a child that has never asked us a single question. We see other families with 3 year olds that continuously ask "Why?" to everything you say. When you hear other parents complaining that their kids won't stop asking questions, I try not to remind them of the alternative.
However, to my surprise, he is also doing well academically through home schooling. He started out with a lot of prompting but now he can demonstrate his independent skill and mastery on fairly complex tasks - for example multiple choice tests in high school Algebra or English.
By now, we know he is highly intelligent, but he has so many repetitive and OCD behaviors it is hard for him to function in the real world.
He is learning to program and he shows some aptitude for it - he seems to be somewhat good (not yet surprisingly good) at finding bugs in short pieces of code. Our hope is that as he grows older, he will gain control of himself enough to be able to function in some assistive setting.
I've read several articles related to autism and software testing. We aren't nearly at that level yet, but your son could be a candidate for those programs. Good luck to you as well.
To me the biggest problem seems to be connecting to the outside world. I've also observed children having trouble with this, as it seems they weren't able to filter relevant stimuli to react on: "Do they speak to me? I don't know.. So I'll continue to wait."
This is a pattern I'm using as well.
However, things I do understand are people reaching out to me very directly with very clear emotions.
Difficult and wrong as it may be, I'd suggest including your daughter directly in conversation as often as possible. She may not understand words, but quite possibly she does understand emotion.
This may at least ease the disconnection she's already observing.
As for examples, she consistently laughs when babies cry, and often when we scold her for any 'dangerous' type behaviors she also laughs. There are times when she will respond appropriately.
We are adjusting to include her more in conversation, asking her to indicate preferences, etc.
Still, your post has deeply moved me and I feel like I can relate to what you're writing.
So I'll again share my feelings: I often respond similar when being scolded. It really is exciting to feel such a strong emotion. Or I'm simply happy that I made a connection to the outside. People get very irritated by that.
My son, who appears completely uncoordinated with random repetitive behaviors, would fit the typical pattern of many of these kids. Even now, if we take him to a grocery shop, his conspicuous behaviors would cause people to stare at him.
Yet, here is an experimentally testable concrete thing he can do: read a complex English passage and answer a series of fairly non-trivial multiple choice questions - for example "What is the tone of this paragraph? a) Irony b) Sarcasm c) Sorrow d) Happiness" type of questions which you cannot simply answer by trivial pattern matching.
No prompting would be necessary and this test has been performed without parents being nearby, on totally new material. In fact, he takes these tests often, partly because we could tell he gets some thrill from getting everything right and that test-taking seems one of the rare times he seems completely focused.
Originally, he was very prompt dependent (as many people mention here), so even I was somewhat skeptical about his real skills, but now I have no doubt.
The reason I mention all this is that no casual observer, not even one who spends hours together with him, would conclude he can do those things. He has no motivation to connect or demonstrate his skills; yet, he now can demonstrate he can do these things independently.
These kids are very complicated, so don't be too quick to dismiss them.
I sincerely hope you still take him to the grocery shop. My daughter stims, makes loud noises, has OCD behaviors, may hit her head, etc. and I make a point of taking her to the stores several times a week. While it's good for her to practice being in public, I also want the public to see her and that there are others like her. As people with autism being in public becomes less of a novelty, other children and adults will eventually learn how not to stare, or in some situations how to help.
It is certainly not the kids that are dismissed, but "silver bullet" methods like F/C. If autism is really like a lock-in syndrome, being fully intelligent and transformed into a puppet (as the documentary "Prisoners of silence" linked in this thread suggests) must be horrible.
His big regression came around 5, we seemed to completely lose him. He lost skills and seemed to lose the connection he had.
We started him on ABA but we stopped it soon because we were concerned about the animal-like training it involved.
The next few years were spent in various types of interventions but without any real breakthrough. Then we started to notice he could pick answers for multiple choice questions, often showing a surprising level of understanding.
For example, noticing that he was hanging around when the TV was on (not really watching, simply hanging around) I remember giving him a quiz: "Barack Obama is a a) Republican b) Democrat c) Libertarian d) Independent" and he would pick the answer. Thinking may be it was a fluke, I would try with Bush, McCain, Clinton and so on, and he would get each of them. This was unexpected because the way he looked and acted, there was no hint he could have known any of these things.
That was the point at which we discovered the prompting method. Initially I was personally skeptical if he really was learning, but by now, given the way he has passed externally-administered tests by people who have no connection to him or us, it is very clear that he was learning all along.
He can still be very prompt dependent in a social setting, but give him a paper and pencil test, he tends to do extremely well. He still has huge issues (OCD, repetitive and random behaviors) and he has practically no social skills to speak of, but he does seem to show a remarkable degree of intelligence.
I'll start with why: this may not be Philip writing to us. I would like to believe it is, and those of us who may be on the autistic spectrum will not find it difficult to believe that this writing is of the ability they had when they were his age. That confirmation bias is but one of a number of cognitive biases that impel us to find Philip in these words. We are, of course, social creatures, and generally when we read heartfelt things like this we will set aside our critical nature. When presented with new and plausible information in the absence of anything that might indicate contrarily, we err to assume that it is true.
But it likely is not. This blog highlights the "Rapid Prompting Method". This method is not strongly supported in blind tests. There is little empirical evidence that it allows persons with nonverbal autism to communicate, and in fact, decades of failed trials that suggest that this and other methods of facilitated communication do not work. It tugs at the heart strings, and it pains me to say this, but it is sadly almost certainly not Philip expressing these thoughts.
What is rapid prompting? It is a process of rapidly presenting someone with options until they have produced sensible text. In practice, it looks like someone guiding a person who is stimming as a human Ouija board[1]. The practitioner silently omits incorrect options, just as superstitious teens neglect digrams that don't make sense when they are found with a Ouija board.
This may be more than that, I would very much hope so. But the American Psychological Association's position on all forms of facilitated communication is firm: they are fraudulent[2]. Comparing rapid prompting to facilitated communication has already been done, as has been written about in NIH-supported journals[3]. These and other methods are woo, as the skeptical community describes it: not science. This woo is perpetrated by unwitting charlatans[4].
That harsh language is necessary, because we are doing something, I think, much worse than merely mistakenly giving a voice to persons with nonverbal autism. Instead, there are loving, adoring parents and "rapid prompting" experts who are unwittingly casting their voice as another's. Instead of undoing the silence of autism, they are turning people into dummies with a textual form of ventriloquism.
What the hacker community should take from this is this: the desire to help those persons who have nonverbal autism is going to be very strong, but you can do great harm by making something that doesn't work. But if you're hacking something together, if you think you have a way to help, be cautious. Don't give in to the desire to "disrupt" this space. Instead, work with the psychological community, work with those who study neurological development. Don't just make something parents and loved ones want, make something that works.
What society should take from this is that when people have their ability to communicate taken from them, it is very easy to put another's voice in their place and have everyone be none the wiser. It is very sad, but that is what happens to many of those "assisted" with facilitated communication. And as always, be skeptical of cures and success stories. It's easy to be swept away by what we want to be true.
And finally, there are people who want to help those with communication disadvantages of all kinds. For those people working on this right now: Take that desire to make something that works, and rigorously apply the skepticism the public should have - but doesn't - to what you're doing. That is vital, it is key, it is the most important thing you can do. Don't allow wishful thinking to turn a child with autism into a puppet.
[1] https://www.youtube.com/watch?v=xp3G8yM2vTg - One of many, many similar videos you can find.
[2] http://www.apa.org/research/action/facilitated.aspx
[3] http://www.ncbi.nlm.nih.gov/pubmed/24102487
[4] http://www.science20.com/countering_tackling_woo/blog/why_ra...
I know many parents of autistic kids, and so many of them are just so terribly desperate for any sign of improvement in their child that they're easily led by charlatans. They'll desperately believe and see patterns of improvement where there are none because they want to believe that they can lead their children to be independent and strong.
I don't know anything about Philip's path to get where he is now, but there are a number of videos of Philip using his current method of communication, which appears to be typing on a bluetooth keyboard to an ipad app that repeats his letters and words back to him.
The mom holds the keyboard, but Philip moves his own hand. Mom seems to use a lot of cues to help him keep on track--shaking the keyboard to bring him back to it, repeating his words back to him--but I really don't see her writing it for him, moving the keyboard under his finger to spell things, or "interpreting" vague gestures.
https://www.youtube.com/watch?v=MK_Q60LhgzA
This one has several minutes of typing where you can see the keyboard and his hand. It's slow, slow going, but it really looks like he's the one doing the writing.
A clear experiment is to replace the mother with a automatic keyboard shaker. Some device with a button that moves the keyboard randomly to grab his attention again, but most of the time the keyboard is completely still. Also, during the experiment he should not see other persons, because it can send another subconscious cues.
A well known case with less emotional weight is "Clever Hans" http://en.wikipedia.org/wiki/Clever_Hans . It was not a hoax or a scam, it was the unsuspected ability to read some subtle clues. And Hash was a horse and he is a child. He is much more intelligent than a horse!!! He probably is better reading expressions and sublte clues. With some optimism, perhaps he even realized "Etaoin shrdlu" http://en.wikipedia.org/wiki/Etaoin_shrdlu are the more frequent letters and that makes the typing easier.
I used to work for a startup that (among other things) made very innovative teaching tools for autistic children. We worked with actual autism experts who run autism treatment centers, and we designed lessons and a curriculum for our product to teach basic social skills to autistic kids (by basic, I'm talking things like "when you greet someone: smile, nod, say hello").
Yes, I'm being vague about what the product actually is because I don't want to 100% tie this account to my real-life identity, but I can tell you that it's unique and got a lot of buzz.
I had a lot of issues with the company's management (for both technical and non-technical reasons), which is why I quit, but one of the reasons I stayed as long as I did was because I believed in the idea of the product, and I felt that it was going to truly change people's lives for the better. It really made me feel the warm fuzzies when a friend of mine (well, more of a friend of a friend, but we knew each other) who has two autistic children one day sent me a message on Facebook saying "I just noticed that you work for [company]!", and she was super-excited to realize that this person she knows works for a company that she follows in the news (and we were a tiny startup, so it's not like I worked for a big megacorp or anything).
See https://en.wikipedia.org/wiki/Facilitated_communication for more information. I also recommend the PBS Frontline documentary "Prisoners of Silence" (transcript: http://www.pbs.org/wgbh/pages/frontline/programs/transcripts..., video: https://www.youtube.com/watch?v=HXw8Ksvyt5Y), which does a good job both debunking it, and demonstrating why facilitated communication can be quite harmful; there was a rash of incidents in which facilitators imagined sexual abuse allegations from children, leading to substantial repercussions for innocent parents.
http://faithhopeloveautism.blogspot.co.uk/2015/04/world-auti...
This should have been made very clear at the beginning of the article.
If you took a neurotypical kid and duct-taped their mouth shut up to age 12, you would be robbing them of the vast majority of reinforcement learning on grammar and wording that we receive as children, and it would knock them down several standard deviations in skill level relative to their peers in constructing sentences, paragraphs, and essays.
On top of all this is the blatant wish-fulfillment. Socialized kids, at least, have a some degree of ego, and don't often express sincere thanks for their parents, their disorders, that their "school values them", or describe their behavior as "Then I would have meltdowns.". These are forced reflections that just don't occur naturally.
On top of all this is the core of autism: Deficits in the theory of mind. Normal kids start to master deception, pretending, prediction of behavior, and empathizing somewhere between 2 and 5, and get gradually better at it as they get older. Autistics have marked problems in these areas. What they don't do is clearly model their audience, model their audience's ignorance of their own mind, then tell their audience to walk a mile in their own shoes, and describe the novel aspects of their mind from the perspective of a neurotypical outsider. There are recursive layers of social intrigue in this paragraph that people with autism would have a great deal of trouble understanding, much less writing:
"Let’s pretend you are like me. You can’t talk, but you have a well-functioning mind and can understand people. Imagine you answer everyone who says something to you, but only you can hear it. Others hear your voice saying things you don’t necessarily mean. They think that’s all you are capable of thinking. People see your repetitive flapping or tapping and they think it serves no purpose. They don’t understand that the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for you to keep up with and people trying to engage with you. It is hard on me to put my stimming away, but I try."
"I love to flap my hands. I flap to feel my body in space. No one goes through the trouble I have to feel my body well. Dare to feel each moment floating weightless in space. I am light and my movement is erratic without gravity making my movement steady. Each day I go crazy not knowing how my body will act. Most people have portly muscle mass to feel their own weight. I do not. I often feel like a bird about to take flight and it makes me flap. I love the sensation of my hands flapping. My hands flap when I am happy. They flap when I am momentarily stressed. They also flap to music. Flapping is important to me. I flap like a bird to feel free from my body. My body is naughty. It acts on impulse too much. No one can discipline it. It has a mind of its own. It makes messes. It acts like a jerk. My body feels tension from stress. Many times I can't feel my body. I am unable to do many things people do without thinking. Lastly, my weary lament for my Autistic friends who can’t communicate kills my soul. Living with autism is hard. I sometimes would like to try living without it but I can't. Living peacefully requires me to accept myself, autism included. I mean to make the most of what I have been given. I have been given a strong mind. I have a mission from God. I am trying to educate the world about autism. No meaning comes from being negative about autism. My slavery to negative stereotypes is over. I am free peacefully pursuing my dreams. Moments are still very challenging but I know I can persevere and someday peacefully make a beautiful life for myself."
"My weary lament"
"I have a mission from God. I am trying to educate the world about autism."
"My slavery to negative stereotypes is over."
I have trouble understanding how anyone could convince themselves this was legitimately a child communicating. It reads a bit like someone trying to make poetic reflections from the point of view of their dog, imagining what it must be thinking and inserting their own florid prose for laughs. If this woman really believes she's speaking with her son, rather than speaking for her son, that's heartbreaking. It reads more like a cruel satire of people who've found themselves in this situation, but to what end I could not guess.
I would have been happy enough having my sister be able to explain that she was screaming because she heard an irritating noise, or tell us what she was getting out of tearing her clothes off, or say she was feeling sad the cat died, or ask us for basic things like not to have to go to the dentist. If we found a way to communicate with her using a vocabulary of ~500 words with simple grammar rather than 5-50 nouns based on immediate wants("cookie", "bathroom", "cheese", "tickle"), all of our lives would have been improved immeasurably... but I wouldn't expect her to start spouting Shakespeare references or Bible verse, and seeing that would cast immediate doubt on whatever method was being used.
If all you knew about him was that he's 5 years old, autistic, and still hasn't figured out the toilet, you might be skeptical of the above paragraph. You'd be prone to evaluate my son based on something other than his actual capabilities.
One thing I've observed with him is that he tends to go from zero to awesome almost overnight. We had the hardest time getting him to speak, and then at around age 2 and a half he ballooned from a 10 word vocabulary to 250+ words in just over a month, and then quickly to complete sentences that were atypically advanced for his age. This sort of thing is normal for at least some subset of the autistic.
Could this have come from an "autistic twelve year old who'd only been communicating for three years"? Absolutely -- if he began communicating, and then obsessed about it the way my son obsesses about numbers. Sure, there's reason to be skeptical regarding the methodology described in one of the comments, but "this could not possibly be a child communicating" is going too far in the skeptical direction.
That's a bit sweeping. Many doubtless would; but there are autistic people who are capable of self-reflection.
A somewhat exceptional example: Temple Grandin, PhD, who has extrapolated from her experience of having autism, specifically the sense of constantly being under threat from her surroundings, to advise on more humane ways of handling livestock: http://en.wikipedia.org/wiki/Temple_Grandin#Career
But even so - we do on occasion need to talk about autism generically. Referring to a classical profile[1] of autistic symptoms, an abstract-concept-of-autism, is simply a necessary shorthand, because the changes in perception & diagnosis of autism have stolen the language I was taught growing up to describe and classify, and sprayed them over a broad swath of behavioral and cognitive problems. It's also quite a bit more appropriate to use the stereotype (while remaining conscious that it's a stereotype, usually correct but not always) when referring specifically to low-functioning minimally-verbal autistics, I suspect.
It looks as if the ABA provision was sub-standard (RPM debate aside) as modern ABA in the Verbal Behaviour mold should be adaptive and rely less on the intensive table sessions (which are still a part unfortunately). Done correctly it can provide the tools for communication, although not everyone will be able to speak with words.
One thing that is interesting is that many of the principals of ABA are used in our mobile apps today, I certainly learnt a lot when reviewing the research and formulating my son's programme and vice versa implementing the ideas and concepts to the mobile sphere..
I thought that one of the few genuine insights made about autism is that so-called autistic people have difficultly reading intentions (their own, or other people's) or even appreciating what minds and intentions are. Which is why they appear selfish, and why they're unqualified to make such statements.
Also sceptical that coercing people to behave in socially acceptable ways is necessary or desirable.
People who are basically happy and left to develop autonomously will tend to converge with social expectations as required. Maybe the spontaneous cures of autism are examples of that: happy children, perhaps shielded from bullying, whose parents supported them enough for this lengthy process to occur.
Whereas trying to train people like dolphins risks making them miserable and thwarting that development.
I don't think this is wholly accurate. My understanding was that people with autism commonly have deficient cognitive empathy (they have difficulty discerning others emotions) but not affective or emotional empathy (they get upset if they hear about others suffering).
With sociopaths, it's meant to be the other way round: normal (or better than normal) cognitive empathy, but a lack of affective empathy -- hence their purported skills in manipulation.
Well that is the only way they could possibly live independently.
Autistic "social skills", like everything else about us, exist on a wide-ass spectrum.
http://np.reddit.com/r/science/comments/33czht/study_of_9500...