I have had the opportunity to work with many autism support groups both in the United States and internationally. Some of these groups claim to be focused on parents, families and children; unfortunately this is seldom the case. Parents usually participate in these meetings for the benefit of their children and rarely discuss anything to help themselves. They become obsessed in trying to figure out ways to improve the quality of life of their children without realizing that they are not paying attention to their own needs. They do not sleep well, have no time to exercise, curtail visits to friends, and never schedule activities for their own relaxation. Spending time on themselves makes them feel guilty; tantamount to neglecting their child’s needs. More so, many of them have an ill conceived notion that they somehow contributed to their child’s autism. Feeling somewhat helpless, they assert self-blame, “What did I do wrong!” Maybe I didn’t take my folate supplements for a few days during pregnancy, had one too many ultrasounds, or took a small glass of wine at a social. They carry the heavy burden of unfounded guilt on their shoulders. Since the job of a parent is to take care of their children until they become independent, this feeling of guilt may accompany them for the rest of their lives.
We have all heard the instructions that flight attendants provide to their passengers: should the airplane cabin lose pressure, please place the oxygen mask over your own mouth and nose before assisting others. For many people it seems inherently selfish to take care of yourself first. However, if you pass out because of lack of oxygen, you would not be in a position to help anybody else. In a certain sense, many parents of autistic children do the opposite. They aim to first improve the quality of life of their children and anything else falls second. In the end, they become casualties of their own desire to be of help. They become victims rather than rescuers. Please understand that you can’t be everything for everyone. Helping yourself is not selfish; rather, it is the first step towards helping others.
Family therapy usually begins when you join a support group. However, some of those meetings should be devoted to sharing the emotions, fears and anxiety of their members. Remember that other members should be empathetic, that they are likely to share similar experiences. These support groups are meant to provide guidance during many family crises. Sharing your own feelings can go a long way towards restoring sanity. I have spoken in previous blogs about the benefits of cognitive behavioral therapy for some autistic individuals. For the benefit of their members, similar techniques in terms of positive communication and reinforcement may easily be implemented in many support meetings.
I believe it is rather unfortunate that support organizations are usually comprised predominantly of females. Although one of the parents may have to remain behind to take care of the children, the experience of the support group should be a shared one. It should also be noted that unless they are participating in an autism-related recreational activity, meetings seldom include teenagers and younger siblings. The lives of these children are severely disrupted. They usually have problems with schoolwork, social life and even their mental well-being. Support groups may be of help by arranging programs that put children together with peers of their own age.
My advice is to do a list of priorities, one that includes the needs of the whole family. Always keep a balance between your own needs and those of others. Prioritize your physical and mental health. Never be afraid to ask for help from members of your support group. Fortunately, in this age of the internet many support groups have a virtual presence on the web. Some of these groups provide self-help tools (e.g,. stress test, free computerized cognitive therapy) that may assist you in your particular circumstances.
Casanova MF. Autism Updated: Symptoms, Treatments and Controversies. Amazon Publishing, 2019.