Examining Life: Adults with Autism Part 4-JOY

This is how Lily demonstrates distress.

Loud noises, particularly high pitched girl’s voices, particularly one of her house mates who makes cockatoo noises when she is stressed, will elicit hair pulling. It begins as a little tug at her hair, not to pull but to communicate her anxiety. If the stressor continues and Lily becomes overwhelmed, the full-blown hair pull will result. Next comes ripping out the hair, pounding the face and blood curdling screams, followed by pounding the head on the floor and kicking of feet, followed by racing toward anyone standing nearby her to grab them in a death grip and bite them while ripping out their throat and hair and head butting them.

Lily rarely gets beyond the hair tug stage now because we have had to resort to medication to help her with anxiety.

It would seem to me that the most prudent thing to do is to prevent this cascade of anxiety in the first place.

So why, despite many people objecting, including parents (me), staff, Department of Developmental Services service coordinator and many others, did the management of the Agency that runs Lily’s group home/residential program move the young woman in with Lily who makes extremely loud cockatoo noises on a regular basis? And why do they make Lily ride in the van with her AND WORK WITH HER EVERYDAY? Why did they put their needs over and above Lily’s needs in making this assignment?

This issue was my last straw in trying to work with this agency.

Now I am working with another agency and other like-minded parents to put together a house that Lily can go home to without  anxiety. Now we can hope to work on making opportunities for Lily to experience JOY.

For Lily,  joy could be running up the stairs and jumping into my bed, snuggling under the down comforter with a happy squeal.

As for me, I try to make every moment count and find joy in everyday things: the many shades of grey at the Maine Coast, with the sky and fog and the water and the shingles on my house merging into one.

What gives you joy?

2 thoughts on “Examining Life: Adults with Autism Part 4-JOY

  1. I needed to think about this post before I responded. I’ve never seen Lily in a full-blown meltdown. I think I’d be frightened. I’d want to help but not know how, and probably be immobilized. If I were her regular caregiver, I’d do anything in my power to stop things short of a meltdown. What are they thinking? And, I can’t imagine how stressful and exhausting and upsetting these episodes are for Lily. What does she do after a meltdown happens, once the storm has passed?

  2. Yes, it is terrifying and you do not want to be in her way. I hide in the bathroom because she will not hurt herself unless there is someone present to watch her do it. Fortunately we are not seeing these episodes; but, we are seeing the hair tugging and the pacing anxiety if she has been around the “screamer” and has her adrenalin up. At home she is happy and relaxed.
    A full blown meltdown exhausts her and she sleeps, much like after a seizure people will sleep.

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