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My six year old has high functioning autism. On paper. Reality is a very different story. One of the more challenging notes in the flavor profile that forms his autism is an apparent inability to separate reality from the imagined.
Ted’s imagined scenarios are a mixture of unique imaginary situations, previous real life events and a dash of excitement from movies or TV shows. For example, Ted’s current hallucination, for lack of a better word, has him hyperfocused on Christmas. Every day now for the past week, Ted spends his day packing and unpacking his toys from one bin into another. He calls these his decorations for the tree. Obviously this is something he has seen me do, and participated in on several occasions.
From there, he pretends to set up a tree. He “holds” the tree in his hands, sets it in the stand, waters the tree and decorates it with Legos, Tinker Toy spare parts and crayons. He asks literally dozens of times each day, “How many night-nights until Christmas?” My current response, after giving him the exact count multiple times each day, is “Too many to count.”
With other, less perseverative children, this would be a harmless way to spend time during the summer. Remembering holidays past, the pageantry and pomp, the trips, gifts and twinkling lights.
With Ted, he is convinced that it IS Christmas right now. That every trip out in town will end in a tete-a-tete with The Big Man. He is desperate to bring a real tree into the house. Obsessed with describing how he wants the tree to be decorated.
Taken from various holiday specials, he has concerns about Santa leaving his bag of toys in our home, reindeer becoming lost and/or ill, sleighs breaking down and how the jolly ol’ elf will get in our current rental when we don’t have a fire place.
These are no mere questions. These are anxiety-producing, panic-filled land mines that he seems to believe we are experiencing right now. The Christmas pretend play has taken on a life of its own so stressful to him that for his own mental health, I have tried, in vain, to make him stop talking about Christmas, Santa or anything even partially related to the theme. He then works himself up about snow (we won’t have it in our new duty station), snowball fights (numerous movies), snow angels, etc.
This is not the only time or topic which snowballs (pun intended) into epic meltdowns for Ted. Scenes from Disney’s Chicken Little are enacted faithfully during every single playground visit. If you happen upon a frustrated mom and a boy yelling, “Everybody, RUN FOR YOUR LIVES!” It might be us. He “rings the bell” and hopes to save all the townspeople by warning them to – wait for it – run for their lives.
Easter egg coloring is another episodic preoccupation. Wanting eggs, right now, needing to color them. Pretending to hide them. Asking everyone he sees where the eggs are. And then, melting, when he realizes that it isn’t Easter. That he won’t be seeing the bunny or getting a basket.
It’s not always holiday related. There are mundane reenactments from haircuts, to the time when a well-intentioned medical specialist gave him a blown up glove to occupy his attention.
He has convinced himself that his new school will be the exact cartoon one in his social story about a new school. That there will be a bell in his new school that he will ring (see above). He is sure, beyond any reasonable doubt, that the will be a guitar for him to play in his new school. No gentle corrections will convince him otherwise.
The problem isn’t that his timing is off, or that he perseverates. The problem is that he can’t separate the situation that he has created in his mind from what actually is. The problem is that I can’t distract or dissuade him from pursuing these fantasies and when I can’t comply, he rages. These fixations cannot be used for any sort of reward or educational purpose, either. For example, I cannot use his obsession with Easter eggs to teach him to count (ie, let’s count all the eggs), interest him in reading, or teaching him about chickens, bunnies or seasons. There is simply no room in his delusion for any other information or speech about the topic other than his questions, his script. Attempts to deviate from that are met with aggression and screaming. When he goes to his new school, and it doesn’t look like the one in his story, and there is neither a bell nor guitar, hell will break loose.
My question to YOU, Gentle Reader, is what is going on? How can I help him. His psychiatrist does not believe it is childhood schizophrenia. She has, in the past, encouraged me to help him talk this out. Though, she never really understood the fact that this will last for weeks at a time and consume his every waking moment. Our past BCBAs have directed us to ignore. Answer the questions once and ignore the rest. Both suggestions net bad results.
Does anyone else have kiddos who do this? How do you help them cope? How can I interrupt the cycle? What IS this? Is there a name for this? If you can offer any sort of advice, please do!
Kelly is a Navy wife and mother to three children; 17 year old NT, 6 and 5 year old boys on the spectrum; and, a perfect-to-her beautiful baby girl. Kelly has been featured in a collection of essays on special needs children entitled, “Wit and Wisdom From the Parents of Special Needs Children.” She can also be found at MyTidewaterMoms.com, and as a guest blogger throughout the blog-iverse. In her spare time, Kelly is the Blog Master for, and member of, the Military Special Needs Network Executive Board. You can contact her via email at KellyHafer@MilitarySpecialNeedsNetwork.com.
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I am not sure I can help, but I can relate. After taking my children to Disney on Ice, my son (ehi is hugh functioning) is obsessed with becoming a professional ice skater. It is the first time he has shown such a desire for a sport so we signed him up for lessons. He is doing great, but often (ok always) he skates away from his beginner classes and tries to join the teen figure skating classes, usually resulting in him knocking an older child to the ground.
Lately he has started watching Peter Pan and now he has decided he needs to “take flying lessons to fly with Tinkerbell.” I tell him over and over that peolple cannot have flying lessons with pixie dust, but he does not believe me.
You know I get this, Kelly. Totally and completely.
Little Miss also “packs for trips” and engages in imaginary scenarios that no one else can understand. When we get her to stop long enough to explain, the explanations are complete gibberish. I recently learned that there are two main characters in her scenarios (“Oh-wah” and “Soo-sah”) who are constantly getting sick or trapped. This causes great distress and often results in Little Miss shouting “HELP!!” loudly in public places (especially awesome since she is Asian and I am not — kidnapping suspect anyone?)
And just like Ted, the imaginary scenarios must be carried out according to LM’s plan. Disruption results in a meltdown. Attempts to change the storyline to include some kind of learning are completely worthless. And trying to join in (so at least she gets social value out of the scenarios) is like trying to join in with a game of Calvin-Ball. The rules change on a whim and what rules there are don’t make sense anyhow.
We’ve decided that it’s just the way LM is, and have been ignoring/letting her go with her scenarios — as long as it is not disruptive to the rest of the family. When we do have to disrupt, I’ve become a master of redirection and am not afraid to resort to a good-ol-fashioned bribe.
Hugs, my friend. I am here for you. If you want to talk offline, you know where to find me.
Although he’s young, maybe a referral for talk therapy or play therapy where this behavior can be directly elicited during a session with a psychologist, therapist or social worker?
I think I would get a second (third, fourth…) opinion on the childhood schizophrenia or talk with a doc that has experience working with children who hallucinate. There are meds to help with that and maybe if you could break through long enough, it would give the space to find out the root problem or diagnosis. I know that’s all easier said than done and finding docs who have this experience is sometimes like finding a needle in a haystack. But I would trust your gut – if you feel like something more is going on, then you are probably right, and if you are not getting the attention or focus you need from the ‘experts’, it’s time to hunt for a new expert.
You are so right. We have since moved across the country, so we will have new eyes on all of our kids. Something positive out of a very stressful move.