5 Best Practices for Working with Autism Spectrum Parents

As a psychotherapist who specializes in working with families affected by autism spectrum issues, I am often asked by other therapists for advice about best practices. Families living with autism, and parents in particular, have unique needs that should be considered throughout the therapy experience.

Here are five of my favorite tips regarding best practices:

1. Screen for Posttraumatic Stress (PTSD)

Research suggests that a child’s autism may increase the risk of posttraumatic stress in mothers. The combination of needing to stay on high alert combined with the nature of the condition being all-encompassing makes for a highly stressful daily life for parents.

Children on the spectrum are more prone to wandering and running away impulsively, which only increases parents’ chances of developing stress-related issues.

2. Educate about Grief

Grief is cyclical in parents of children on the spectrum and can arise at the least convenient times—the child’s birthday, the diagnosis anniversary, during or after an individualized education program (IEP) meeting, or after the child has a meltdown. Parents should be educated about the grief cycle and how it affects them, as well as strategies for dealing with intrusive and overwhelming feelings.

It’s also important to understand that men and women tend to grieve differently and at different rates, which can create unrest in relationships and marriages. Couples counseling is often a helpful and necessary part of helping the child.

3. Make Sure Self-Care Is a Priority

Many people head off into adult life not knowing how to engage in true self-care. We live in a society that values getting it done—and doing so without letting anyone see us sweat. Autism parents who try to do this are set up for failure.

I like to use the oxygen mask metaphor, which many therapists know well but laypeople may not be familiar with. When you get on an airplane, you hear something along the lines of, “In case of an emergency, please put on your own oxygen mask before helping young children and others.” Why? We cannot help others when we are struggling to breathe.

Likewise, many parents are unable to “breathe” because they try to help their children without first making sure their own needs are met. When I work with parents of kids on the spectrum, I like to start by asking them the basics about what they’re eating, their sleep hygiene, and their ability to manage stress.

If you ask a parent of a child on the spectrum when he or she last took time for themselves, there’s a decent chance you’ll elicit a laugh. If you ask about exercise, he or she might walk out of your office. These parents are spent beyond spent. Additionally, many are not getting quality sleep.

4. Help Parents Plan Breaks and Find Support

Regular breaks need to be planned in the lives of most parents of children on the spectrum, and helping them identify people they can ask for help is often crucial to their well-being. Many parents will tell you that they can’t hire just any babysitter, and they’re right. Leaving a child with special needs with someone new can be frightening and overwhelming.

Parents may need help finding care they can feel good about.

Parents may need help finding care they can feel good about. Many states have programs that provide respite services. In Florida, where I practice, these services are provided through the Medicaid Waiver program. There are often wait lists and plenty of red tape to get through, but it’s worth the trouble. Many children will need care and assistance for the rest of their lives, so while a wait list might seem unreasonable today, it’s worth having these services in the future.

5. Encourage Proper Medical and Psychiatric Care

In my practice, I see an inordinate amount of health problems among mothers of children on the spectrum. Research supports the notion that such moms, in particular, have poorer physical health than those with typically developing children. In fact, it was found to be worse than for parents of children with Down syndrome and other conditions.

Thyroid disease, fibromyalgia, and chronic fatigue are rampant, in my experience. I cannot speak to the reason for this, but I suspect it’s a combination of both genetics and overwhelming stress. I commonly see depression, anxiety, and substance abuse as well. Proper referrals for these parents are crucial.

As a therapist, the help you can provide families affected by autism spectrum issues is invaluable. Having some knowledge of the lives they live can increase not only your empathy, but also your ability to make a lasting difference.

References:

1. Allik, H., Larsson, J., & Smedje, H. (2006, January 4). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. BioMed Central. Retrieved from http://www.biomedcentral.com/content/pdf/1477-7525-4-1.pdf
2. Roberts, A. L., Koenen, K. C., Lyall, K., Ascherio, A., & Weisskopf, M. G. (2014). Women’s posttraumatic stress symptoms and autism spectrum disorder in their children. Research in Autism Spectrum Disorders, 8, no. 6, pp. 608-616. Retrieved from http://www.sciencedirect.com/science/article/pii/S1750946714000427
3. Wandering. (2015). National Autism Association. Retrieved from http://nationalautismassociation.org/resources/awaare-wandering/

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