I Have No Training in this Autism Thing!

So you have a newly diagnosed child, and you don't know what you are supposed to do with the diagnosis of high-functioning autism (HFA) or Asperger's Syndrome (AS). What's next? Why won't this kid listen to me? One of the hardest things about having a child with high-functioning autism is that often they can seem so normal. In fact, it is easy to fool yourself into thinking the child in question has no neurological difficulties. It isn't until you come face to face with the deficits that you are reminded of the disability in the first place.

An illustration: suppose you ask your child to put his shoes away, then hang up his coat and get a snack. Many kids would get distracted in the middle of this set of instructions. Vague multi-step directions are difficult to attend to and continue tracking. You might come back a few minutes later and find the child playing video games, having completely forgotten what you said. However, a child with autism might completely fall apart and tell you it's too hard or they can't think or it's too loud. She might lash out in anger, or throw herself on the floor in frustration.

A better approach is to tell the child, "Go and put your shoes in the shoe bin." Most kids can handle a directive of this nature. Once the child is done, make the second request. "Now, hang up your coat in the hall closet." Finally, "Go into the kitchen and get a cookie and some milk." Absolutely specify what you want the child to do. Name the item and the place it goes. Whereas most neurotypical people can handle directions that are not spelled out, often vague directives are a set-up for failure for a child with autism.

Don't just tell her to get dressed: tell her what to wear. If you want her to change her underwear, don't assume she will. You must tell her. If you send her in to brush her teeth, spell out the steps. Better yet, have a sign with clear instructions in the bathroom. Teach. Teach. Teach. Clearly spoken expectations are the name of the game here. Repeat after me: Never Assume. This is the motto for a parent of a child with high-functioning autism/Aspergers, and even ADD. Don't assume the child knows the right thing to do. Spell out each step of what you want him to do, at least at first.

The one thing that a parent of a child with autism needs? Patience, in abundance. Refusal to follow a request isn't necessarily a child who wants to disobey. There are many reasons why a child with autism doesn't follow what you say.

He may not understand what you are trying to communicate. He may feel overwhelmed. He may lack the experience to complete the job he was given. He may get stuck psychologically or perseverate upon his pet subject. He may get distracted along the way.

Part of the problem with autism is that many people with autism see everything. They lack the normal filters that most have for deleting information that is not relevant to their quest at the time. Think of it as the difference between a wide-angle lens and a zoom lens on a camera. Most of us can zoom in on the details that are relevant to us. If we head into the kitchen to make a peanut butter sandwich, we know to go to the drawer and get a knife, pull out the bread and open the peanut butter. These are steps required in the making of our sandwich.

In autism, certainly heading in to the kitchen happens, but look, out the window! A hummingbird! And did you notice the circles of sunshine on the wall over there? And there is a spot in the paint.... the rug in front of the sink needs to be vacuumed, oh, that piece of dirt looks like a snail...drawer, 4 drawers, first drawer on right, drawer handle clicks when moved, knife, shiny, forks, spoons, corkscrew. Counter is shiny like a mirror, except for the breadcrumbs (what kind of bread? Bread is good it is made of flour and yeast, yeast is alive...), coffeepot needs to be cleaned...

Once it is realized what someone with autism is up against, it is easy to understand why so many requests seem to get ignored or have to be asked multiple times. And if the drawer is opened and there are no knives there? Don't assume the child will look in the dishwasher, especially if he is having a hard day. Again, walk him through the process. Walk him through it, over and over again. As he gets older, there will be less of this step-by-step parenting. You are empowering him for the future.

Another area of frustration both for the parent and the child is social interaction. Many with high-functioning autism have what is called "perseveration," that is, the locking in on a pet topic or area of interest, with a single-mindedness that few possess. This can be a problem in social situations because, lacking the social cues needed for regular conversation, many children with autism will often go straight to the area of interest and talk about it, non-stop.

The child will be completely oblivious to the normal hidden signals that mean, "OK, I have had enough of this topic now, let's move on." A person looking at their watch and glancing at the door will be completely lost on a child who is explaining a video game in step by step detail. The child isn't trying to be rude, he really just lacks the ability to read peoples' signals and carry on a regular conversation.

Helping the child figure out other topics of conversation, role-playing possible conversational approaches and teaching the child to ask questions about the other person are some good ways to combat this. A child with autism will grow and change. And though he may never truly abandon the dependence he has on his pet subject, with practice he can learn to have a two-way conversation.(and it might not even involve his pet subject!)

It has been said that the job of a special needs' parent is to help the child learn to balance the tray of his life. This tray is full of half-full (or half-empty, depending upon your view) glasses that must constantly be rearranged to keep the tray from becoming unbalanced and toppling to the floor.

Helping a child manage his feelings and sensory input is not always an easy job. What worked today won't necessarily work tomorrow. To be a parent of any child is to search for new strategies of coping. To be the parent of a child of autism is to constantly seek new input and try new things. It is important not to get upset with the progress, or what seems like lack thereof. Celebrate small victories. Research new strategies, but don't overdo it. It is easy to become overwhelmed by the sheer volume of knowledge out there on the subject. So, pick and choose. Read wisely. Feel free to try new approaches, but know that not all interventions work for everyone. It is not necessarily a reflection upon your parenting or upon the child.

So, what are some things you can do right now, with little training, in order to help a child with autism? Communicate clear expectations. Give complete instructions, and be specific. Avoid words like, "that" or "over there." Spell out locations and items. Set the child up to succeed. Teach him about conversation, and conversational cues, including non-verbal cues. Teach him to ask questions about the other person and answer according to those questions. And if possible, help the child find some aspect of his area of interest that is interesting to others, as well.

With practice, both parent and child can learn to live comfortably with autism. Be positive, and go easy on one another. High-Functioning Autism/Asperger's isn't a death sentence, it is just another way to look at life. The child is still as wonderful as he was before diagnosis. Autism is part of who he is, it doesn't have to define him.