Severe Autism: “I Can’t Cope with It, Show Me What to Do”

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When someone is overwhelmed, when that person doesn’t know what to do, it seems unreasonable to ask the person to step back and study the situation. “The situation doesn’t let me step back,” may be the response. “How can I step back from a problem when I’m surrounded by it? How can I take time to study the situation when the situation takes away all of my time? I need to be shown, not told to find out for myself. I don’t have time for that!”

In the case of providing care for the severely autistic, that’s understandable. Severe autism (where the autism is debilitating) can so completely engage a caregiver that exhaustion seems inevitable, and injuries commonplace (ABPP & Gardner, PhD, 2012; Gomes, Lima, Bueno, Araújo, & Souza, 2015; Lovell, Moss, & Wetherell, 2012). Though caregiving can be consuming to the point of exclusion of nearly everything else, finding time to find help is crucial, before frustration and anger are taken out on the child (Debucquoy-Dodley, 2013; McGinty, 2013; WGN Web Desk & Francisco, 2013).

“I agree, but show me how to find help!”

Here are several ways to find help:

1. Tell your child’s physician the full story, if you haven’t already, and ask for advice.

2. Contact welfare services for your child and ask for respite care.

3. Make it clear to your family and friends you need help, even if you have asked before, but make it clear that you cannot continue without help. Remember this is only one avenue. You can succeed even if your family and current friends are unable to help.

4. Contact parents in similar situations. This can be dangerous, because likely you do not know these people, but on the other hand you need to reach out. Contact them, but be cautious. Take the time to learn who they are (they should not be trying to hide themselves when dealing with you). Do not give out too much personal information (no social security numbers or birth dates!) until you have met them and can verify their backgrounds (ask for verifiable references such as teachers, pastors, lawyers, or mutual friends). Look for autism meet-up groups in your area via Meetup.com. Even if you can’t attend a meeting, you might find that some members live near you, and you could meet closer to your house or at your house. I’ve mentioned “Douglas Acres” before, at Douglas-Acres.org, which an attempt to create a long-term care and research facility for the severely autistic. (“Attempt” means it is not running yet, but is looking for more families who can band together to launch the operation.) The business office for Douglas Acres is located in Pennsylvania, but call or email them no matter where in the US you live. The philosophy at Douglas Acres is that human life is sacred, and that both the severely autistic and the caregiver must be protected. Maybe that is what you and your child need.

ABPP & Gardner, PhD, F. L. (2012). Nursing of Autism Spectrum Disorder: Evidence-Based Integrated Care across the Lifespan. Springer Publishing Company. Retrieved from https://books.google.com/books?hl=en&lr=&id=uTrxShe4sjQC&oi=fnd&pg=PA292&dq=caretaker+overload+autism&ots=iXZ8nGQfJ7&sig=3eSdFAn7LROpkBa6SgNl4VvEthc#v=onepage&q&f=false

Debucquoy-Dodley, D. (2013, September 10). Michigan autistic girl recovering after alleged murder attempt. Retrieved October 5, 2015, from http://www.cnn.com/2013/09/10/justice/michigan-autistic-murder-attempt/index.html

Gomes, P. T. M., Lima, L. H. L., Bueno, M. K. G., Araújo, L. A., & Souza, N. M. (2015). Autism in Brazil: a systematic review of family challenges and coping strategies. Jornal de Pediatria, 91(2), 111–121. http://doi.org/10.1016/j.jped.2014.08.009

Lovell, B., Moss, M., & Wetherell, M. A. (2012). With a little help from my friends: Psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD. Research in Developmental Disabilities, 33(2), 682–687. http://doi.org/10.1016/j.ridd.2011.11.014

McGinty, K. (2013, July 11). Missing Calif. boy’s brother arrested on murder charge. Retrieved October 5, 2015, from http://www.usatoday.com/story/news/nation/2013/07/10/human-remains-missing-boy/2505491/

WGN Web Desk & Francisco, T. (2013, June 12). Mother, caregiver charged with autistic teen’s murder. Retrieved from http://wgntv.com/2013/06/12/mother-caregiver-charged-with-autistic-teens-murder/

Feliks Marcin
Advocate for those with invaliding autism. Author of a self-help booklet for parents of the severely autistic. Researcher into causes of invaliding autism.