I am working on this as series of posts in reation to some of the "lists" I have been seeing about autism and children with autism. Some of the lists are good. Some of them are not. I'm going to start with one that is well-intentioned and useful, but which obscures problems associated with autism and getting services for children with autism.
Part One: Ten Things Your Autistic Child Wishes You Knew
This is a list that was posted on an autism support board I was reading.
1. I am a child with autism. I am not "autistic". My autism is one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings, and many talents, or are you just fat (overweight), myopic (wear glasses), or klutzy?
Commentary: Actually, when providing services or trying to get services, you do describe yourself as fat/obese, myopic, or even clumsy. If I want services for diabetes, I am referred to as diabetic. The problem comes when everything related to my child is blamed on his autism. 'Normal' children(or more properly, 'neuro-typical') have sensory issues, intense interests, and communication problems. Normal is what you are. There is no such thing as a neuro-typical individual; the idea is an ideal, and we all have quirks. The autism is only a problem when it become debilitating, and then we need to disccus Joey as autstic, in order to get him some help for dealing with attributes related to his autism which do not allow him to function in the neuro-typical, non-autistic world- blocks to his independence and happiness.
2. My sensory perceptions are disordered. This means the ordinary sights, sounds, smells, tastes, and touches of everyday life that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. A "simple" trip to the grocery store may be hell for me. My hearing may be hyperacute. Dozens of people are talking at once. The loudspeaker booms today's special. Muzak whines from the sound system. Cash registers beep and cough. A coffee grinder is chugging away. The meat cutter screeches, babies wail, carts creak, the flourescent lighting hums. My brain can't filter all the input and I'm in overload! My sense of smell may be highly sensitive. The fish isn't quite fresh, the guy standing next to us hasn't showered today, the deli is handing out usausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles in Aisle 3 with ammonia... I can't sort it out, I'm too nauseous!
Because I'm visually oriented, this may be my first sense to become overstimulated. The flourescent light is too bright. It makes the room pulsate and hurts my eyes. Sometimes the light bounces off everything and distorts what I'm seeing. The space seems to be constantly changing. There's glare from windows, moving fans on the ceiling, so many bodies in consttant motion, too many items for me to be able to focus, and I may compensate with tunnel vision. All this affects my vestibular sense, and now I can't even tell where my body is in space. I may stumble, bump into things, or simply lay down to try to regroup.
Commentary: This item is useful for people with no background or understanding of autism. However, trips to the store or into the outside world are not "hell" for all people with autism. The point is to highlight sensory issues that are possible. Joey loves going to the store (though lately the Walmart has been a bit overwhelming). However, he has vestibular issues. Ever walked down the stairs, miscounted, and thought there was one more step? remember that feeling of your foot suddenly meeting the floor, when you were expecting more time before the shock hit your foot? My child goes through life liek that, with every step.
I also know that Joey does not only tunnel-vision, but tunnel-hears. When there is just too much, he cannot deal, and cannot either see or hear you; or he cannot filter propoerrly, so is seeing and hearing things other than what you think he is hearing or seeing. Neuro-typical people do this as well. Ever be listening intently to music or watching something, and suddenly realize someone is trying to get your attention?
3. Please remember to distinguish between won't (I choose not to) and can't (I'm not able to). Receptive and expressive language are both difficult for me. It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear. "!!%#@%*^, Billy. (*&)^^$%$" Instead, come speak directly to me in plain words. "Please put your book in your desk. It's time to go to lunch." This tells me what you want me to do, and what is going to happen next. Now it's much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It's very confusing for me when you say "Hold your horses cowboy!" when what you really mean is "Please Stop running." Don't tell me something is a "piece of cake" when there's no dessert in sight and what you really mean is"This will be easy for you to do". When you say "It's pouring cats and dogs", I see pets coming out of a pitcher. Please just tell me "It's raining very hard". Idiom, puns, nuance, double entendre, and sarcasm are lost on me.
Commentary on 3 and together: Problem? In dealing with the neuro-typical world, these children need to learn about idioms and complex instruction and speech pattern. You cannot get a regular job and expect everyone around you to accommodate a need for plain English. If the goal is to help these people be independent, we need more services for speech and language. However, no one wants to provide them. The schools provide minimal service only if you have a severe (25% or greater) delay in speech and language skills. Insurance often does not cover speech therapy, as the service is viewed as educational. You get caught in a catch-22 of semantics!
5. Be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened, or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation, or other signs that something's wrong.
There's a flip side to this: I may sound like a little professor or a movie star, rattling off words or whole scripts well beyond my developmental age. These are messages that I've memorized from the world around me to compensate for my language deficits, because I know I'm expected to respond when spoken to. They may come from books, television, or speech of other people. It's called echolalia. I don't necessarily understand the context or terminology I'm using, I just know that it gets me off the hook for coming up with a reply.
Commentary: this is just more emphasis on the need for proper, appropriate, adequate speech and language instruction and services. To be able to function, an individual needs to handle complex and abstract concepts and thought. We need to do more work on how to teach these skills, just as we teach them how to learn other concepts and skills.
6. Because language is so difficult for me, I am very visually oriented. Show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of patient repetition helps me to learn. A visual schedule is extremely helpful as I move through my day. Like your day planner, it relieves me of the stress of having to remember what comes next, makes for smooth transitions between activities, and helps me manage my time and meet your expectations.
Commentary: This item implies that visual orientation is due to language difficulty; however, I would suggest that the other way around is more likely. Because Joey is so visually oriented, oral communication is more difficult, as it makes less sense. Many autistic individuals (not all) are very proficient readers, and can communicate very well using computers and written language; however, they become like Mrs. Who when it comes to forming their own thoughts and words orally.
I have no problem with raising a Mrs. Who, so long as we can make the quotes all appropriate.
7. Focus and buildon what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough or that I need fixing. Trying anything new when I am almost sure to be met with criticism, however constructive, becomes something to be avoided. Look for my strengths and you'll find them. There's more than one right way to do most things.
Commentary: I have been begging Joey's teachers and therapists to do this- let's use the skills he does have, the interests and strengths he displays, to teach him things he has more trouble understanding and skills he has trouble mastering. I am tired of paying money to have him evaluated and programs planned, only to have those programs include teaching him to count, name colors, and recognize letters. He already counts to 120, knows all his colors (and in fact, defaults to this if he doesnt't understand the question you are asking), and can read. Thanks. Can we please use these skills to teach him to ask questions, respond to multiple cues, and other important building-block skills?
8. Help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply don't know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I may be delighted to be included.
Commentary: When I hear about the trouble the parents with elementary-aged kids are having with getting the school to organize social groups, it makes me extremely angry. Other kids get opportunities to build social skills- lunchtimes, parties, class changes, special events- my child deserves a change to build these important skills as well. Social skills are vital life-skills. Without them, you cannot hold a job, participate in human relationships, or function with other people. We all know people with poor social skills, and the stigma they face. Who wants to be around people who are rude, cold, or appear self-centered? People who seem to ignore basic social etiquette? We label them as nerdy, weird, eccentric. We ostracize them. We don't invite them to the Christmas party, to lunch, or even to small conversation. We actively exclude people who are not pleasant to associate and socialize with. Social skills need to be taught, emphasized, and worked on, just as much as any OTHER skill. Yes, social skills are vital to independence and success!
9. Try to identify what triggers my meltdowns. This is termed the 'antecedent'. Meltdowns, blowups, tantrums, or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses have gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
Commentary: This is a fun one. What situations cannot be avoided? What skills are needed to get Joey through these situations? My school personnel are sayign he cannot tantrum and be in an inclusion setting. This is bullcrap. His classroom may need a paraprofessional to watch for antecedents and help the teacher with teaching coping skills, but these meltdowns are not normal. They are not intentional. They are part of a disibility that should be accomodated, and when he is accomodated properly, THEY WON'T HAPPEN.
10. If you are a family member, please love me unconditionally. Banish thoughts like "If he would just..." and "Why can't she..." You didn't fulfill every last expectation your parents had for you, and you wouldn't like being constantly reminded of it. I didn't choose to have autism. Remember that it's happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you that I'm worth it.
Commentary: I thought this was an interesting item when I read it. When I wasn't fulfilling my parents' expectations for me, I bet you they were thinking "If only she would just..." and "Whay can't she...?" And in fact, when I am askign these questions, I am looking for answers to help Joey learn necessary skills. It also completely discounts a parent's frustration, which occurs even with parents of neuro-typical children. Are parents of neuro-typical children allowed to be upset, disappointed, and frustrated? If they are allowed, why aren't I? Perhaps we need to focus on the outcome instead. Being frustrated, disappointed, or upset does not give a parent permission to have their own temper tantrums. However, it happens. Then what? And what about other "family members"? And what about supporting those parents who are trying hard to support their children? Insurance semantics, school manipulation, anything and everything not to get services to my child, and telling me I have to now be a professional child advocate, speech therapist, occupational therapist, school teacher, special education teacher, etc.... Hello. I'm an art historian. If I could suddenly be all of these things, why do I have to pay all these people? Why do they have to go get college degrees in order to practice? What's that all about?
Continuing item #10:
It all comes down to three words: Patience. Patience. Patience.
Commentary: Yes, indeed. Somehow parents of disabled and "differently abled" children are supposed to have an extra measure of patience. It would be nice if those who are supposed to be supporting my child- his teachers, his therapists, his administrators, etc- would show that same support and patience... It get very frustrating to have pateince preached at you, when everyone around you is working against you, resulting in stress- that lowers patience.
Continuing item #10:
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts that autism has given me. I may not be good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates, or pass judgment on other people?
Commentary: Well, no. Joey does lie. He does tattle on classmates. He does try to cheat at games. There are people he likes, and people he doesn't like, which is definitely "passing judgement." These are normal things to be doing. However, he does have important talents and abilities. He may not be good at speaking, but he can tell time and read and count and understands concepts of quantity. He may not be able to initiation play with his classmates, but he can ride a bike in figure-8s and is excellent at memory games. This item was simply not stated very well.
Continuing item #10:
You are my foundation. Think through some of those societal rules and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
Commentary: teaching social graces and basic social rules is vital to independence. Why is it necessary to sit in a resteraunt? Because you disturb other people if you stand to eat. If you don't greet people, they may find you rude. If you can't keep your hands to yourself, you could be arrested for assault! Which social rules do you really think can be set aside? How will setting those rules aside help the child become independent?
Continuing itme #10:
I probably won't be the next Michael Jordan, but with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
Commentary:
We only speculate that these people has an ASD. We don't know. However, I like the inclusion of Einstein on this list. I keep hearing about "Einstein Syndrome"... but from everything I read about it, it sounds like ASD to me! High-functioning people with autism still have autism. They still need to be taught to learn and to socialize. They need to be taught skills to encourage independence. They need to have their sensory issues addressed. They still need services. They have the same right to the opportunity to live independent, functional lives as any neuro-typical child.
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