A friend of ours once told us that two strong “Is” make a strong “We” in the context of marriage. Putting it in the context of a family dealing with autism spectrum disorders (ASD), parents should be mindful to allot enough time for themselves so that they are strong individually and as a couple. That gives strength and patience for caretaking and all the other challenges that come with ASD stressors in family life. For couples, this means the parents can act as a strong unit; they are there to support each other when one of them is depleted.
We facilitate in the marriage preparation program (Pre-Cana) for our parish. The first thing we discuss with our engaged couples is communication. It is the building block that ensures that the marriage will last through life’s challenges that eventually do come. Interestingly, we learn a lot from these engaged couples. They face many difficulties in today’s world, not the least of which is juggling careers and financial issues. Life today is demanding, fast, expensive and stressful. It takes commitment, but most of all open communication, to handle it all. Open communication includes expressing feelings, not minimizing or dismissing the other person’s feelings, and fighting fairly (no name calling, raising of past history and the like). One may not agree with the other person’s viewpoint (feelings), but the feelings exist and they have to be acknowledged. After that, the feelings have to be addressed in a positive, constructive manner. Likewise, a family dealing with ASD must communicate its feelings to get them out and dealt with. Sometimes people have negative feelings or beliefs that are erroneous, and just having another person say that those feelings are baseless relieves stress. Keeping the feelings bottled up only perpetuates the negativity, guilt, etc.
The predominant issue we see is that one parent is accepting of the ASD diagnosis, but the other is not. That is a recipe to divide and conquer the unit that must come together to work positively. The lack of cohesion affects the child’s education as well as the medical and therapeutic treatment the child will receive. Additionally, the extra cost associated with a special needs child (special medical care providers who may not take insurance at all or not the insurance the parents have, special classes like social skills classes, special needs groups, etc.) is a stressor as well. If the parents do not have the financial ability to pay the additional costs, that child does not benefit from these associations. Parents should be advised of and take advantage of the free services available to their children through local libraries (craft classes, etc.), town programs, after-school activities, and family support services (after-school activities, respite, etc.) through their state developmental disabilities office, such as the New York State Office of Mental Retardation and Developmental Disabilities (NYS OMRDD).
Another critical item is networking. A parent cannot go this journey alone. At the very least, they should join their local Special Education Parent Teacher Association Network (SEPTA) to network with other parents who have blazed the trail before them – and it’s never too early to join. These parents are an excellent source of information – what challenges they faced and how they handled them, who are the “good” professionals versus the “not so good,” what programs/services are offered through school as well as learning about organizations that provide support services, such as the Asperger Syndrome and High Functioning Autism Association’s (AHA) support groups.
Michael Buffa, Vice-President of AHA, and his wife Carol are both attorneys and co-wrote this article. The Asperger Syndrome and High Functioning Autism Association (AHA) is a well-established parent and professional support and education organization based in New York serving the autism community nationwide through our hotline, website (www.ahany.org), listserv and conferences. The majority of the members of the board of directors have a family member on the autism spectrum.