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Sunday, October 12, 2014

The Need for Services for Parents of Children with Autism

From Psychology Today

By Darren Sush, Psy.D., BCBA-D
October 3, 2014 

Getting support for yourself IS supporting your family.

Like with most families, parents of children with autism experience immense joy in sharing in the accomplishments and growth of their children. However, in addition to the traditional pride and delight that comes with being a parent, parents of children with autism must also find triumph in what, for many onlookers, may seem to be insignificant interactions and negligible occurrences. Reciprocating a greeting, or imitating a short sound, can be cause for massive celebration for families of children with autism.

Some of these families have become accustomed to relishing in these proportional successes, acting as a bridge over more difficult times, and reminding them of their child’s potential to flourish in the world. Unfortunately, with the immense stress and debilitating struggles of navigating the world of autism without appropriate support and guidance, a growing number of parents of children with autism often find themselves physically and emotionally exhausted, and feeling as though they have nowhere to turn.


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As access to services geared toward establishing and building adaptive skills and communicative abilities for children with autism continues to grow (yet still remains drastically disproportionate to the overall need), the availability of supportive services aimed specifically at the immense mental health needs of parents of children with autism is tragically limited and illusive.

Of course, all parents face daily struggles. However, parents of children with autism experience unique and heightened challenges that can lead to increased anxiety, depression, self-doubt and stress, including negotiating with school districts and funding sources, initiating and facilitating interactions with other children (and other parents), and concerns over their children's safety and acceptance.

However, even the most thorough list of typical challenges and struggles encountered by parents of children with autism, can never be completely comprehensive. Each family will have their own items to add, and their own personal experiences to include. The longer the list grows, parental capacity to independently manage and cope with stressors may decrease.

Studies have shown that though parents of children with autism often show resilience when faced with obstacles and challenges (Sanders & Morgan, 1997), they may have more limited coping strategies for managing stress, and thereby experience greater severity of strain on their overall family system (Sivberg, 2002).

Unfortunately, while parents of children with autism experience more justified stress, they may have limited ability to access the resources that do exist. Whether it be because of inadequate time, restricted financial resources, expended energy, or simply the fact that parents of children with autism must be so focused looking for threats, and protecting their family, that they are unable to shield and care for themselves.

The recent event in Anaheim, CA in which two parents were arrested after holding their 11-year-old son with autism in a kennel intended for housing dogs garnered national attention. The drastic decisions of these parents to inappropriately protect their child and their family from the aggressive behaviors of their son, sheds light not only on the ever-growing crisis of accessing appropriate and life-changing services that assist children with autism in developing safe and adaptive communication skills, but also points to the fundamental and imperative need for increased support for parents in navigating the uncertainty and stress associated with autism.

While this particular case has gained awareness due to its extreme details, the overwhelming pressure and strain that contributed to these parents’ actions is, by no means, unique. The involuntary seclusion and restraint of a young boy with communicative, adaptive and behavioral difficulties should never be condoned or accepted. As the Autism Self Advocacy Network notes in their statement surrounding the media coverage of the attempted murder of Issy Stapleton by her mother, “There is never a justification. There are always other options.”

Again, to be perfectly clear, there is never an excuse or rationale for causing harm to your child, and there are always other options. Unfortunately, despite the obvious need for supportive services, many parents of children with autism are either not provided, not aware of, or do not access the resources geared toward helping them achieve a more balanced and healthier life.

Although the availability of supportive resources remains deficient, parents of children with autism need and deserve support in not only helping their children and their family, but also in helping themselves to identify and cope with their own stressors.

As the number of reported cases of children diagnosed with autism continues to rise, situations such as this should be considered a blaring alarm pointing to the growing necessity of providing specific and specialized mental health support not only for these children, but also for their parents, to prevent tragic events from ever occurring again in the future.

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