5 Best Practices for Working with Autism Spectrum Parents

child and parent hiking and reading a bookAs 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/

© Copyright 2015 GoodTherapy.org. All rights reserved. Permission to publish granted by Janeen Herskovitz, MA, LMHC, therapist in Ponte Vedra Beach, Florida

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • bob

    bob

    October 6th, 2015 at 8:04 AM

    I would assume that there are many families with autistic children who go without the help that they need because they simply don’t know what is out there and available to them. I think that any time we can pass along resources and connections for them they will be so grateful.

  • janeen

    janeen

    October 6th, 2015 at 10:33 AM

    So true, bob. Thanks for the comment.

  • Tabitha

    Tabitha

    October 7th, 2015 at 10:46 AM

    It should be okay for these parents to feel some grief because you know that when they get this diagnosis then there is a sadness there that the rest of us may not understand. You have all of these hopes and dreams for your children but an autism diagnosis could leave you feeling like none of these will ever be realized even though that might not be the case. There is a sense of loss there that they could be feeling and we should let them know that these feelings are valid and understandable,

  • janeen

    janeen

    October 7th, 2015 at 1:50 PM

    Tabitha, absolutely! Their grief tends to be cyclical with no closure. Thanks for the comment.

  • Fran

    Fran

    October 8th, 2015 at 12:18 PM

    I see so many of these parents who are unable to take very little time for themselves, because they are so focused on their children.
    They need to know that their needs are still important too, and that it is in the best interest of everyone for them to learn some ways that they can continue to nurture themselves too.

  • Rhonda

    Rhonda

    October 9th, 2015 at 8:14 AM

    Kind of amazing (and not always in a good way) the toll that stress can play on the body.

  • janeen

    janeen

    October 9th, 2015 at 8:45 AM

    Fran, it’s so true. I find it’s an unhealthy combo of unresolved grief, hyper focus on the kids, an inability to see their needs as important, AND the added difficulty of having a child who’s disability demand so much attention and constant vigilance . It’s a challenge, but one that is so rewarding when they finally “get it.”

  • janeen

    janeen

    October 9th, 2015 at 4:13 PM

    I agree, Rhonda. Thanks for the comment.

  • canyon

    canyon

    October 12th, 2015 at 9:11 AM

    While you think that this diagnosis is only about the child there are a number of ways that it can impact the marriage of the parents as well. It can be difficult to learn how to juggle the lives of the children with having a married life too and if you are not very careful then you are going to let something lose importance in your life. You don’t want that to be the relationship between you and your spouse because is going to be your biggest source of friendship and comfort.

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