Tag Archives: support

Parental stress and autism: what’s effective at reducing it?

Raising children is an extremely rewarding experience. That’s not to say however that every minute of every day is spent with smiles and adoration for our offspring. Generally speaking the majority of parents I imagine though, would look favourably at the experience of going the family-way.

The rosy picture of having a family is however never truly complete without realising that having children can be quite a stressful experience. Whether as a result of those earliest days of sleep deprivation and almost constant diaper changing duties, through to some of the growing pains as puberty beckons and even onwards into the adult years, stress is a pretty constant companion to the family journey. Oh and also how many kids you’re parenting.

To have a child with additional needs, whether a physical disability or intellectual / developmental disorder, has been suggested to carry it’s own unique challenges which can also impact on parental stress levels. I’m not saying that, to somehow blame or stigmatise or anything like that, but merely to reflect the quite extensive body of research which has concentrated on that point.

There is also quite a large evidence base to suggest that parents report greater levels of stress associated with raising a child with an autism spectrum disorder. Indeed it is with this area in mind that I want to focus on “Stress-reducing interventions that are needed for parents and especially parents of children with autism”.

The question is: what kinds of stress-reducing interventions are available and more importantly, which ones work?

I don’t claim to have some special insight into these questions, but a quick Google of the research literature offers a few potentially important pointers.

Social support. “Oh, I get by…With a little help from my friends” was a song by the Beatles but also it is perhaps little surprise that through the wonders of social media and the Internet, on-line social support groups for parents of children with autism are numerous and easily accessible in our digital age. With all the talk about how such resources might be ‘changing our brains’ (erm, or not), I’m minded to say that in this example, it might actually be a change for the better.

Mindfulness. I know, I know. It sounds like psycho-babble mumbo-jumbo to the nth degree when you first hear it. But actually I’m becoming quite a fan of mindfulness. The basic idea is to think about the present, stay focus on the present, and manage the thoughts and feelings that are linked to stress. The evidence base for mindfulness for relieving caregiver stress is what might be described as emerging with some potential bonuses for offspring too. It’s worth pointing out that mindfulness techniques are seemingly also finding a role in helping some people on the autism spectrum as well.

Parent training. I must point out that I am in no way trying to say that anyone is in need of “training” just in case anyone thinks I am. I am merely referring to the body of literature which ‘suggests that there may be some merit in looking into this option with stress relief in mind. There are positives effects this has on parent stress levels. Training programs designed to teach parents ways to enhance their coping skills, relationship development skills, how to increase their social support networks, will collectively make changes in their environment that are critical to reducing parental stress.

Outside interests. a hobby or some type of external interest such as physical exercising, dancing, martial arts, etc. all serve several health benefits that are more than just for a physical purpose. Fun, self-esteem building, stress releasing are just a few.

Respite. I don’t think this needs much explanation. More respite care was associated with increased uplifts and reduced stress. Indeed, part of that reduction in stress was seemingly getting a little more quality time with your significant other. It can’t be stress enough how important respite care can be to some families.

I’ve only really scratched the surface on parental stress and autism and how one might go about tackling or reducing it. If you want a perspective from a parent living with autism who is also an author on autism, look no further than from these insights. Let us also not forget other siblings of the family unit too and how stress can affect them.

What remains apparent is that (a) parenting, as well as very rewarding, can be a stressful activity, (b) parenting a child with additional needs can carry some of its own unique stresses and (c) tackling or reducing that stress has got to be a win-win situation for everyone concerned; importantly not just for the child, but also for parents.

Dear Pamela,

Many thanks for the email and kind words. Please, by all means, use the post if it helps at all. Everything on my blog is published under a creative commons license meaning that dissemination is absolutely implied!

Good luck with your new venture and book.

Regards

Paul

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Paul Whiteley B.Sc(Hons) M.Phil. Ph.D

 

How to Become Your Own Child’s Autism Advocate

Autism numbers are rising. As several disorders on the spectrum are grouped collectively to fall under a single diagnosis of Autism Spectrum Disorder, the number of children and adults alike are also rising. Nonetheless, it remains a complex neurological disorder with equally complex diagnosis, causes, and therapies or treatments. The feeling of being a parent to one with ASD, however, remains the same. Overwhelmed, frightened, confused? These feelings are nothing new. It is normal to have apprehensions and more questions than answers.

Your child, however, needs you now more than ever—and the best way to help him or her is to widen your knowledge about autism and its eventual effect on your child.

So, what to do to become your own child’s autism advocate? Here are some ways how:

Enroll in Parenting Classes

Look up your local yellow pages for a nearby autism institute and research center. These institutions always provide parent- education classes, seminars, and symposium catered specifically for parents whose son or daughter is diagnosed with ASD. Some classes regularly meet on a weekly or twice-a-week basis for several weeks or months to teach you how to set realistic and doable short- and long-term goals. It has a set of curriculum to follow that allows parents to learn practical skills, techniques and strategies on how to go-about your child’s disorder and improve his/her skills. Some research centers also tackle collaborative initiatives with educators and professionals in a way of developing tactics for school and home.

Attend Community Outreach Programs

Another low-cost option in learning about autism and is by joining community-based training. Most programs initiated in communities are sponsored by experts in the field of autism. These programs usually follow the same core curriculum as that of institute-based classes. In some, groups engaging in open discussion and usually facilitated by parents to autism children provide lectures on ASD tapping awareness, life skills, social skills, and other specific aspects of autism. This parents’ forum are often considered the very tie that binds autism communities across regions providing valuable knowledge and support to families with members on the spectrum.

Online Tool Kits

The internet continually proves to be an indispensable part of raising autism awareness and in providing support to families dealing with ASD across nations. Free online tool kits are available for families in various websites. These kits usually provide important and relevant information on the disorder, treatment options, coping strategies and techniques, and goal-setting. Some websites, like Living Autism Now (www.livingautismnow.com), provides a portal that connects families to the best professional help and services in their localities. It also provides ample information and links to resources as well as a space dedicated to answering questions and for sharing experiences with others.

School-Based Programs

Primarily targeted to parents with school-age children, this program type usually deals on how parents and teachers can best met the educational needs of children with autism. The program usually consists of lectures, forums, seminars, open-discussion groups, and one-on-one engagement initiatives. Each school has its set of curriculum to follow, and to best gauge which will work best with your child is to check with its special education teacher or its guidance counselor.

Faith-Based Programs

Some religious communities have also set-up its own outreach program to aid in the growing need for autism awareness and acceptance. If you belong to a certain religious congregation, try checking with the local parish priest, catechists or lay ministers for any open discussion groups or counseling care. These programs often tap on providing families with emotional and spiritual support.

There are many resources available nowadays for you to choose from. As parents, we only want what is best for our children. Each autism case is unique. Finding one that will best suit your child and your expectations solely depend on your choices.

CACI: A Circle of Love and Support

One of the hardest struggles of autism is finding a community that supports its intricacies. Life with autism can be a tough one, often leaving many families on their toes. We all know that amidst the rising numbers of autism cases across the globe, there are still communities out there who chose to turn a cold cheek on families who needed their support and understanding the most.

I am, however, lucky to have found a compassionate and supportive community of like-minded people whose core values revolved around uplifting families, parents, and siblings battling not just autism but a plethora of neurological disorders. The Community Autism Centre Inc. or CACI is a community-based non-profit centre offering support for families, parents, and siblings such as resource information, music programs, educational programs, social skills group, training and advocacy, workshops and mini-workshops, and (yes!) consultation for adult support.

I was hosted by CACI one night and had tremendously enjoyed the time spent with them talking about my family’s journey and my own journey with autism. I presented my book (Living Autism Day.by.Day) to them, too, and the overwhelming support from these people truly tugged at my heartstrings. Like me, they also undergo the same rollercoaster ride with autism and hearing them share their experiences was enlightening and inspiring. It made me feel like having an extended family to reach out to, to hold on to when the going gets tough, and to laugh with on certain encounters that bring tears of joy to the eyes.

Feel free to check out their Facebook Page – https://www.facebook.com/groups/cacisaintjohn/ – for more information, and on November 29th at 7pm at the Buccaneers Pub on 24 Main St. West, CACI will be holding its Steak N Stein dinner and live auction extravaganza. Tickets are at $25 with the proceeds going directly to the CACI community of support. Mark your calendar, folks!