Being a Caregiver for Autism

This is in response to a request for stories via Autism Daddy for a person writing about Care Taker syndrome, so it’s focused on my experience.

“How constant care giving 24/7 for years on end affects us physically, emotionally , in our relationships, and even our careers. Side effects of depression, PTSD after traumatic events etc..etc…medications for depression..stress mgmt..”

Two of my children were diagnosed with Spectrum disorders as children. The first time, I reached out more and simplified my life, dropping my Geographic Information Science aspirations. The second time, I didn’t talk very much to friends about it for months, and I decided to go back to school to become a nurse. There are probably various other factors in what else was happened, but it’s strange to consider, that the same person presented with the same problem can have a nearly opposite response.

With the first diagnosis, I tried to be positive, but I grieved strongly for the part of my life I let go in the process. With the second diagnosis, I very much grieved for the child. And then I picked up the pieces and started creating a new life for myself and our family.
It may be controversial to say I grieved over an autism diagnosis. I have been through the death of a child, and of course it’s not the same as that. Perhaps adaptation is a better term. Though there was definitely denial. I hoped this youngest child would pull out of it the same way my second child (who was never officially diagnosed) did.

(I have five children, the first that died, a second who we didn’t have diagnosed because we didn’t want a label and they managed grade school okay, a third who is about as affected as I am, a fourth who is the first diagnosis I talk of, and our baby who remains kind of baby like).

“As affected as I am.” That was a big part of my adaptation with diagnosis of my 4th child. And I think it’s something we don’t talk a lot about. Some forms of autism are more familial than others. Some parents also struggle with change or have sensory issues or are prone to melt downs. Some of us won’t seek help because our mothers assure us that we or our siblings didn’t talk for years. We may be high functioning or Broader Autism Phenotype.

Martin Seligman reports that people are less happy as major life stressors (death in family, divorce, major illness) accumulate up to 3, but after that, they seem to develop resilience. For an example from popular culture, there’s Eliza in the play Hamilton.

So I couldn’t really say to just anyone “a healthy response to a life sentence as an autism caretaker is to change profession.” You may not be there in your life. And my older children may have suffered from being called on to be caretakers when I returned to school. Fortunately, there are a lot of online study options these days.

Something that intrigued me from the time when my youngest was diagnosed was an emphasis on self care. It’s a nursing theory that has been adopted into mental health that self esteem benefits from being able to take care of our own needs. In nursing, it is about supporting the patient as they approach health (or greater function) and an analogy to supporting a child with Autism is clear enough. But the application of this idea to our own mental health is to expect progress, but be patient and constantly assess our readiness to take another step.

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