One of the biggest stressors for parents of children with autism is the question “What will happen to my loved-one once I am gone”.

For those looking for support on this and other stressors related to parenting someone with autism, you will find very helpful information at http://www.myarchway.org/ and you can also join us on our social networking site at http://www.myarchway.ning.com/ to join with thousands of other parents trying to find solutions to lifespan planning issues and the need for quality community housing for adults with autism.

Here are the primary stressors for parents of children with autism:

FUTURE CARE GIVING CONCERNS: Parents’ know that they provide their child with exceptional care and fear that no one else will take care of their child like they do. This may be parents’ most significant source of stress.

PARENTS ARE LEFT GUESSING: A child with autism may not be able to express their wants and needs. Is the child crying because they are thirsty, hungry, or sick? Both parent and child are left frustrated.

AGGRESSION: The child’s frustration can lead to aggressive or self-injurious behaviors that threaten their safety and the safety of other members of the family such as siblings.

STEREOTYPIC & COMPULSIVE BEHAVIORS: Concern parents because they look peculiar and interfere with functioning and learning.

DEFICITS IN SOCIAL & LEISURE SKILLS: When a child lacks appropriate social skills they become isolated. Individuals lacking in appropriate play and leisure skills require constant structuring of time, a task not feasible to accomplish in a home environment.

DIFFICULTIES WITH EATING & SLEEPING: When parents are exhausted because their child has difficulty going to or staying asleep, the parent’s nerves get frayed and they have more difficulty tolerating stress. Parents are also concerned about the child’s limited or unusual dietary requirements, requiring a parent to prepare “several meals”.

FINANCIAL PRESSURES: Expensive interventions and services can drain families’ resources. One parent may have to give up a job because of care-giving demands. Financial strains are exacerbated by having only one income to support all of the families’ needs.

FEW FAMILY EVENTS: Maladaptive behaviors may prevent families from attending events together, e.g. mom stays home while dad takes sibling to the game. Marital relationships are impacted when we can’t do things “as a family”.

MARITAL ESTRANGEMENT: Is caused by misunderstandings, lack of communication, and little time spent alone between spouses because of extraordinary parenting demands and unqualified childcare. Spouses frequently experience “misplaced anger” by their partners and may be unaware of the link between anger issues related to the “stages of grief” and “chronic stress”.

EXPERIENCING CHRONIC SORROW: Is a psychological stressor that can be frustrating, confusing, and depressing. On-going feelings of grief and loss of a “typical” child and loss of the “lifestyle” that they expected for themselves or their family. Theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle, as different events trigger grief reactions. (Worthington, 1994)

OUT IN THE COMMUNITY: Taking an individual with autism out into the community can be stressful for several reasons. People may stare, point, or make comments...or may fail to understand certain behaviors, and e.g. child takes food off a stranger’s plate at McDonalds. Also, child might run off, get lost, or impulsively run in traffic before parent gets a firm grip of their hand.

SOCIAL ISOLATION: Parents are reluctant to attend religious activities, parties at friend’s homes, or family functions because the child may inadvertently break something, spill a drink, make noise, or have an “accident” and soil someone’s furniture.

SIBLINGS: May experience stress because of embarrassment around friends; jealousy regarding parental attention; being target of aggressive behaviors; trying to make up for deficits of their sibling; concerns regarding parent’s stress and grief; concerns over their role in future care giving.

CHANGE: The behaviors of symptoms for people with autism are constantly changing, so as a result, parents are subjected to the stressors caused by change.

FOUR STAGES OF CHANGE

DENIAL: During this stage you find it hard to believe that the way you have been doing things won’t continue to work. Or, if a change has been announced, you may deny that it really happened. If it is a change that you don’t like, you will deny it longer.

RESISTANCE: Once you realize that a change is going to occur, the next thing that happens is that you begin to resist the change. You may resist giving up the old ways, or you may resist what is new.

Emotions relating to resistance: -anger -guilt -frustration -sadness -confusion -fear

EXPLORING NEW OPPORTUNITIES: After you’ve integrated the change, you can explore new opportunities that the change has made possible. You look for ways you can maximize the benefits of the change. Change becomes neither “good” nor “bad”. It is both.

ACCEPTANCE: You can now see clearly what is positive and negative about the change. You have integrated the change into your life and you’re ready to go on. It has become woven into the tapestry of your life.

Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4