Raising a child diagnosed with an Autism Spectrum Disorder is a journey. It requires a lot of support. There will be challenges but many wonderful rewards. It can be a difficult process but when you have the right people around you, it is a road well-travelled.
As I write this article, I feel a sense of joy, hope, peace and love. Helping to support parents caring for a child with autism is my passion. What is parent support? It is when a group of parents come together to share their concerns, joys, fears, excitements, challenges and love for their child on the autism spectrum. The word “support” has many definitions. In this sense of parent support as it relates to parents supporting each other in groups, it can be defined as: “Lean on me, don’t judge me, be there for me, embrace me, allow me to cry and please listen to me.” Also, it means that during those times when you feel like the world is on your shoulders or everything is crumbling down, with a positive support group, you will know you are not alone.
What parent support is not is complaints, negativity, judgments, critiques, hopelessness and feeling alone. On the contrary, parent support is positivity in the most caring, empathetic and dynamic form. It is not clinical therapy. Rather, it is therapy for the mind, body and soul. In my opinion, every parent should have the right to belong to or be a part of a group that provides that special judgement-free place to share and connect.
In a survey of 219 parents of children with autism, Sharpley, et al. (1997) found that more than 80% of parents reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers. The authors commented that the three most stressful factors of being a parent of a child with autism are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.” Subjective parental pain and consequent stress went unobserved (Johnson, 2013).
Mothers, you must take some time out of your hectic schedule for some “me time” in life! Too often, as a woman you feel and think you are a superhero that can do it all, raise the child and take care of the family while failing to take care of yourself. It is important to step back and think about when you last set aside time to take care of yourself to manage the stress of everyday life. When you take some “me time” to care for yourself, it is like having a delicious piece of chocolate melting in your mouth – the sensation of relaxing and focusing on yourself is quite intoxicating! Challenge yourself to bring out your fabulousness. Love yourself enough to be alone and take that quiet moment just for you.
Fathers, while often overlooked, also need support. Seeking out help and support is not a feminine thing, it is a real thing. You too have concerns about your child and how to best support his unique needs. It is alright to cry and feel helpless but you must translate these feelings of despair into motivation for seeking out support. Find a group that embraces your emotional yet exterior macho side. It’s out there – believe me I see it. When you and your partner are getting this vital support, your home and surroundings are calmer, more relaxed and more conducive to providing support to each other. Get to know other men who have a child with Autism. Be proud to speak of your child. Boast, embrace and shine in the moment. Connecting with other fathers will show you that you are not alone.
Sigan Harley, a University of Wisconsin-Madison researcher, conducted a study that showed more than 30 percent of fathers of grown children with autism experience symptoms of depression so severe that they warrant clinical attention. Harley states, “Fathers of adolescents and young adults with autism are really faring the worst” (Diament, 2011). This statement confirms my observation of the fathers I have served who attended the support group. Most of the fathers have a difficult time expressing their fears, concerns or even acceptance of a child with Autism. It seems difficult for them to speak about the disability and some of them may not voice their opinions. I realized that with the fathers, they too have to be reminded that they are not alone and need support. I will always remember the words of one of the parents, “I was flying blind until I started attending this parent support group. The blinders are being removed. I can be a better parent and be more supportive with my wife in raising our son on the autism spectrum.” When you hear words like this, it affirms the critical role that support groups play for parents.
Parent support groups vary. As a parent, you will have a sense of which group fits your unique needs. Life is about choices. We tend to make choices based on how we feel, other people’s input and based on societal views. My advice to you when picking a support group is to always go with your instinct. Trust that gut feeling, that butterfly sensation in your stomach, that sense of comfort or discomfort – this is a given gift to us that we rarely utilize. Support in all manner must feel good. Positivity reigns over the negativity. The aura or dynamics in the group should give you positive energy and should show respect to all and for all.
Parents, you deserve having “me time” or a time to relax. You have to rejuvenate yourself as you raise your child on the autism spectrum to live a functional and social life in the community. Be well, stay strong and think positive.
Here are some tips when looking for a support group:
- Get in contact with the support group facilitator
- Visit the group
- As you visit the group, you will get a sense of the dynamics
- Ask yourself these questions: Do I feel comfortable? Am I able to feel that I can share without being judged?
Finally, find a support group that educates, supports, empowers, uplifts and enlightens each of you. As my husband and co-founder of My Time Inc., Wayne Clarke stated, “Parent support is not a new phenomenon but My Time Inc. is bringing a new and dynamic perspective to it.”
For more information about My Time Inc., please visit www.mytimeinc.org or email Lucina@mytime.org.
Diament, M. (2011, May 13). Autism Takes Heavy Toll On Dads – Disability Scoop. Retrieved from http://www.disabilityscoop.com/2011/05/13/autism-toll-dads/13097/
Johnson, J. (2013). Parental Stress | Autism Research Institute. Retrieved from http://www.autism.com/parent_stress
Sharpley, CF, et al. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability 22, 19-28.