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 towards 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.
[caption id="attachment_954899" align="alignnone" width="960"] Encourage siblings to get involved in family activities.- courtesy Sataish Rampersad[/caption]
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 t
