DR RADICA MAHASE
“We used to think that we were a close family but my son’s diagnosis showed up all the weak links. It started with the extended family. When Jabari was diagnosed at age three, my in-laws blamed his developmental delays fully on me. In their words, “something must be wrong with her otherwise the child would be good.”
My own parents felt pressured – they didn’t blame me but they kept asking what we going to do with’ a child like that.”
The response from Jabari’s aunts and uncles varied, with the uncles actually being more understanding and willing to learn about autism and what help we needed. The aunts, who were all mothers themselves, were more curious about how Jabari will relate to their children (his cousins) and whether he would be able to play with them or if he “would be dangerous to have around our children.”
Sadly, Tricia’s experience as stated above, did not stop with the extended family. It eventually impacted on her marriage. Tricia said, “My husband and I were married for 12 years, we thought we had a strong marriage and we could face everything together but our relationship was tested when Jabari was diagnosed, and ultimately it failed. It started with us just not being on the same page – I just wanted my child to be able to grow up to be independent, he wanted the perfect child. I celebrated every little accomplishment, for him, they weren’t enough. Every little issue became a massive fight and within a year that was the end of our marriage.”
Many families with children with autism and other special needs/disabilities in general have to deal with additional stress factors. In her research, Ashley Hartmann, St Catherine’s University, stated, “An autism diagnosis can be perceived as a loss for the family… This in turn produces feelings of grief, stress and confusion. Immediately, with no warning or preparation, the family has to transform and adapt to a new lifestyle. Daily routines become much more complicated, family vacations become much harder to plan, and families find themselves no longer able to do some of the things they were once able to do.”
The main problems are usually financial ones as families struggle to provide all the "extra" requirements such as therapies, private schools and so on. Communication challenges and lack of time for self-care also contribute to high stress levels. Siblings also feel a sense of loss and/or embarrassment as they struggle to relate to a brother or sister who is "different." Many siblings feel ignored as parents focus more on the special-needs child; some may crave attention from their parents. Sometimes this can be translated into resentment and can lead to deeper issues.
When the entire family is involved, the extra support can really help the individual who is on the autism spectrum, as well as the family. Dr Jennifer Hillman, Pennsylvania State University noted that grandparents provide “emotional, practical, and instrumental support as well as being emotionally supportive and providing the parents with empathy.” Also, siblings can be the biggest advocates and allies for their special-needs brother or sister.
One family psychologist, Adrian Clarke, suggested that the family bond can remain strong when all members of the family are encouraged to play a role in the autistic child’s life. This can be done by making sure that everyone understands autism. Clarke suggested that parents include the siblings in diagnosis and therapy, and allow them to ask questions, encourage them to make suggestions so that they can truly understand their brother/sister. The same applies to the extended family. Sometimes older generations might have certain perspectives and it will take more effort to educate them but once they understand and accept, they can provide much needed emotional and structural support. In this regard, communication is very important.
Some other ways to encourage strong family bonds is to make sure that all members of the family participate in activities regularly. Too often the focus is on the special-needs child and other members, especially siblings, can feel left out of activities. Also, it might help to modify family traditions or create new ones so that everyone in the family can participate. You might have to organise birthday celebrations and so on in a way that every family member can still participate, and can still enjoy. This way, there is always a sense of belonging and no one feels isolated, so the family remains together as a unit.
It is also important that the responsibilities are shared – even siblings can help out in whatever way, so that no one member of the family is perpetually stressed. The extended family might need to put aside their judgments but ultimately, if that is not happening, it might be less stressful to cut ties to prevent further stress. At the end of the day, the common love for the special-needs child can supersede the challenges. And remember, “raising a child with autism doesn’t take a special family, it makes a family special.”
Radica Mahase is the founder/director of Support Autism T&T