What is autism?
Autism is three separate problems rolled into one.
1. Autism is a Speech and Language Disorder. Autistic people do not understand language in the same way that other people do. (I will refer to nonautistic people as neurologically typical or NT's.) They do not learn to talk or comprehend speech in the natural, organic manner that NTs do. These problems manifest themselves in different ways.
Some autistic people will learn to talk at an unusually early age. Their deficits come out later in life, when they have trouble comprehending other people's words. Conversations with a verbal autistic child may be one-sided. They have trouble answering questions about a reading assignment. They can't explain why a character in a book did something or how a character knew something.
Some autistic people learn to talk eventually, but it is a very arduous process. They learn to talk, in the same way as NTs learn a foreign language. They have to translate the pictures in their head and turn them into words. Like NTs in a foreign language class, they need rules, verb conjugations, and lots and lots of practice. They memorize all the words to a movie, because their brains are desperately trying to figure out all the gibberish around them.
Others never learn to talk at all. These kids are so cut off from our world of words that they stop bothering to interact at all. They go into their own worlds and are said to be not "related."
Because autistic people have trouble understanding words and language, they compensate by being especially attentive to visual information. They are human GPS systems. They are glued to computers and videos. Autistic people who have good hand control may become wonderful artists. Others who are able to make the visual pictures in their head move may become engineers.
In the past, scientists thought that verbal autistic kids had a better chance at leading a normal life than children who lead to speak gradually. They don't think that anymore.
2. Autism is a Sensory Integration Disorder (SID). Autistic people are extremely sensitive to sound, touch, sight, smell, and taste. Not all autistic people are sensitive to the same things and in the same way.
Some autistic people are so picky that they only eat three foods. Others can't tolerate the sound of a parade or a loud train. Others gag at the smell of a church. Others pick at the tags on their shirts. They don't like the feel of sand on their feet.
These sensitivities fluctuate. Sometimes a child will be more sensitive than other times. Stress may be a factor.
My son hates the feeling of tags on a shirt and long denim jeans. These sensitivities distracts him in school. He hates when people touch him lightly on the shoulder. He hates the smell of incense in a church. Sudden loud noises make him flee in terror. He stuffs his fingers in his ears during particularly loud movie previews.
Other kids are almost dead to these stimuli. They are less sensitive than NTs. They don't feel pain when they fall and may love dirt and slime. They don't have enough control over their limbs to properly hold a pencil or run in a straight line. They try to have some sensation of feeling by flapping their hands or twirling in circles. The brain needs sensation to work properly.
Some kids will be sensitive about one thing and not another.
Eye contact is a sixth sense. Eye contact is visual touch. Autistic people may have trouble with eye contract; it makes them extremely uncomfortable. Avoidance of eye contact exasperates the language problem, because we take in millions of conversation cues by reading people's faces.
These sensitivities create distractions, stress, and anxiety.
SID problems can decrease overtime. Autistic people need gentle nudges, baby steps, to overcome these problems. However, they probably never go away. Some adult autistic people find relief with anti-anxiety medication.
3. Autistic people are Extreme Systemizers. They like to put things in order and find patterns. They are a human Dewey Decimal System.
Some autistic people, who have lesser deficits in other areas, can use this characteristic to their advantage. They find careers that prize systemizers — computer programmers or librarians.
Others become so distracted by systemizing things that they close themselves off. They may systemize strange things that have no value and really should not be systemized.
My son was an early systemizers of words. He was able to decode letters and written words at an unusually early age without any instruction. However, he was so consumed with systemizing and decoding words that it would distract him from the world around him. In nursery school, they learned to not seat him next to a bookshelf because the words were too distracting; he wouldn't listen to the teacher.
Systemizers may have an extreme need to systemize the world around them. Like OCD, they like to have their bedrooms organized in particular ways or wear certain colored shirts on certain days. They like fixed schedules.
Because the world is not an organized place, this lack of organization will cause some autistic people great anxiety. They find peace in an ordered world. Anxiety then leads to a further shut down.
What Now? Should I Panic?
No panicking allowed. If your child is like this, don't panic. There is a lot that can be done, and lots of kids grow out of the worst problems. You'll find good people to support you. This post has gone on long enough, so I have to cut it short. But if you have a question, leave it in the comment section.

Various medical professionals have wanted to diagnose both of my daughters with autism over the years, but I’ve resisted, partly because of the label and partly because I didn’t believe that they were actually autistic, they didn’t fit all the criteria. I knew them better than the doctors. What we’ve settled on is Sensory Integration issues and anxiety for the oldest one and Pervasive Developmental Delays for the younger (which she has mostly grown out of with a combination of therapy and plain old time.) I’ve spent the better part of their childhoods at speech and occupational therapy, but they are both doing very well with only a few small problem areas. I’m hopefull for their futures.
Thank you for this informative post.
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I’m still trying to figure out what my son’s issues are, but this in particular rang true for me: “They have trouble answering questions about a reading assignment. They can’t explain why a character in a book did something or how a character knew something.” He’s a bit too young to do extensive reading comprehension stuff, but the signs are definitely already there. Do you have links to other places where this problem in particular is discussed?
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“He’s a bit too young to do extensive reading comprehension stuff, but the signs are definitely already there. Do you have links to other places where this problem in particular is discussed?”
I can’t find the relevant posts right now, but I know Katharine Beals has written on this problem. She has done a lot of posts on the problems of the high-functioning autistic in school. Here are her autism posts for browsing:
http://oilf.blogspot.com/search/label/autism
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Ianqui – I don’t have any links to reading comprehension problems off hand, but will shoot you links if I come across them. Reading comprehension problems by themselves don’t mean that your child has autism. It can be a sign of autism for verbal autistic kids who slip through the cracks at first, but all by itself, it doesn’t mean anything. It’s an emerging skill in younger kids. If it persists, it could mean a tracking problem or dyslexia or seven other things. If you are really concerned, talk to your son’s teacher and get her/his feedback.
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You’re right, of course–if comprehension were his only problem, I wouldn’t have commented. But he’s got an IEP for other stuff too, so really there’s a constellation of issues. Individually, they’re minor, but together, well, I don’t know what to make of it. (He’s seeing an OT and a PT, and has a SEIT in the classroom. He didn’t initially qualify for language, but his SEIT is concerned about some language issues.)
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A good article on significant improvements in children diagnosed with autism after behavioral therapy:
The editorial: http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12045/abstract
and the article: http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12037/abstract
(Both are unlocked and available to everyone, an interesting connection to Laura’s previous posts on open access).
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Ianqui, when Ian was 2-1/2, we took him to a neurologist to get a diagnosis. His only problem at that time was that he couldn’t talk. Weirdly, none of the SID problems came out until he was 4. He didn’t have any repetitive behavior and didn’t have any of the other typical markers for autism. He could read, but we just thought was a mute genius. When we told the neurologist that his only problem was that he couldn’t talk, she didn’t believe us. She said that problems don’t happen by themselves. They travel in packs.
It sounds like you and your school are very much on top of things. Just a tip… An autism diagonis is a much better thing than a vague diagnosis of this, that, and the other thing. An autism diagnosis qualifies you for a whole bunch of services that you wouldn’t get ordinarily.
More here on autism recovery.
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Great post, Laura. I’d add that these issues can pop up in widely variant ways.
Many people tell me that autistic people are more visual and so that Autistic Youngest must be very visually-oriented. Nope, she’s been text-oriented since she was a toddler, pointing out all the “W”s on a page and spelling out EXIT or STOP from signs she saw. But aural communication seemed to go in one ear and out the other until she had completed years of therapy!
So when you suspect that autism is an issue affecting a child you know, you need to critically examine all the solutions or therapies that are suggested since not all will be as appropriate as imagined. We opted for communication posters in school that were text-only and vocabulary sheets she could use to supplement her lagging oral communication over illustrated guides.
Good luck, Ianqui, and thanks, Laura!
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