I sit in my newly cleaned office, listening to Tony through the ceiling. He’s reciting a movie, word-for-word, and having a ball upstairs. The feelings I have are so extreme. One minute I’m laughing with him, and the next my thoughts are wondering off on how others his age are getting ready for prom, and senior skip day, getting jobs and choosing colleges. It’s bitter-sweet, as I sit here totally entertained by his Hollywood performance.
I ran across something that has really helped me over the years and I thought I’d share it with you all. It’s incredibly insightful and I hope it helps you all understand more about autism.
(Taken from “10 Things Every Child with Autism Wishes You Knew” by Ellen Notbohm)
I am a child with autism. I am not ‘autistic’. My autism is only one aspect of my total character. It does not define me as a person.
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.
Please remember to distinguish between won’t (I choose not to) and can’t (I’m not able to). Receptive and expressive languages 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 me from across the room, this is what I hear: #$%^&*. Instead, come speak directly to me in plain words. “Please put your book in your desk, Tony. 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 is much easier for me to comply.
I am a concrete thinker. I interpret language literally. Idioms, puns, nuances, double entendres and sarcasm are lost on me.
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 is wrong.
There is, however 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 I have memorized from the world around me to compensate for my language deficits. I don’t necessarily understand the context or the terminology I’m using. 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 learn. Visual schedules, day planners, and other visual supports are extremely helpful as I move through my day.
Focus and build on what I can do rather than what I can’t do. 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.
Help me with social interactions. It may look like I don’t want to be social, but I may not know how to start a conversation or enter a situation. If you can encourage other children to invite me to join them I may be delighted to be included.
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 has gone into overload. If you can figure out why my meltdowns occur, they can be prevented.
If you are a family member, please love me unconditionally. Banish thoughts such as “if he would just…” and “why can’t he…?” You didn’t fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it.
It all comes down to three words: Patience. Patience. Patience.
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 autism has given me.
Words to live by…