Challenge : In adulthood, the sibs will become "parents"

Someday, inevitably, it will happen. My parents don’t want to think about it but, its true- the sibling of an autistic child will most likely take on the role of guardian and advocate in the absence of the parent or if the parent is unable due to medical issues. I always felt that anyone I marry has to take that into account. Since my husband was able and willing to take on the challenge of caring for my brother, and in some ways knew what my brother was dealing with I married him. My husband suffers with bio-polar disorder and growing up he was labeled ADHD. So, he tended to be more understanding than most guys because he too was atypical and was treated differently growing up.

My recommendations for parents are to discuss future plans with their children when they reach adulthood. Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, as said in a recent article for the Autism Society of America. But this isn't a discussion to initiate with younger children — unless they bring the topic up on their own.
I found an article that showed that many of the children that were interviewed showed deep concern for their autistic brothers and sisters. One 15- year old sibling said, “I'm very interested in trying to help find a cure. I'd just like to get a neat little pill someday for my sibling that they can pop in with their apple juice and hopefully be normal." This statement is so true of many siblings. But, I really don’t know what it’s like to have grown up with a normal sibling since it was always, just Brian and I.

Being the brother or sister of a person with autism does not end with childhood. These are lifetime relationships that mature and grow over the years. The concerns of an adult sibling will be different from those of children. For the young adult, questions may focus on his/her own plans to have children and concern about whether there is a genetic component in the autism of their sibling. In some cases, young adults may also feel a keen sense of responsibility for their brother or sister with autism that makes it difficult for them to leave home and begin an independent life.
It is important that parents discuss with their adult children the expectations they have in caring for the person with autism, as well as reassuring them about the legitimacy of their assuming their own role as adults.

The questions of the role of the adult child become most acute as parents age and begin to anticipate the point when they will no longer have the stamina to continue to care for their child with autism. If the person with autism is not already living outside of the home, this may be a time when placement in a group home or supervised apartment becomes important. In those families where such care is necessary, adult children and parents must together address the question of who will assume guardianship for the person with autism when the parents die.
It is not easy for any of us to talk about our own death, and both you and your child may shy away from the conversation. Nonetheless, your adult children need to understand the financial plans you have made, the care arrangements in place, and your own expectations for them as I have previously mentioned. Having these difficult conversations will ultimately be a gift to your adult children who will know that they can honor your wishes.

In conclusion, please remember that we siblings need attention too. We are much more aware of what is going on and what expectations are as the “other” child. What parents must understand is be open with your child and talk with them about what you have planned for the future of their atypical sibling. The best conversations I have had with my mom and dad were ones that entailed their vision for what the future holds for Brian.

Picture: My brother Brian, my father and grandfather