A stigma is a negative or unfair belief about a group of people. Many groups have faced and fought stigmas throughout time. We most often think of stigmas when attached to groups such as minorities or different religions. But stigmas surround any group we don’t understand, including those with autism. Some of the negative and incorrect beliefs about autism include:
- People with autism don’t want to make friends or have emotional connections with others.
- People with autism don’t have any emotions.
- People with autism don’t understand other people’s emotions.
- Everyone with autism is like the “Rain Man.”
- Autism is caused by a lack of love by the parents.
- Autism is caused by bad parenting.
- People with autism aren’t smart.
Stigmas hurt the people they are aimed at, but never so much as when the stigma comes from within your own family. Tammy is the mother of twin boys, both on the autism spectrum. Tammy noticed something was wrong before the boys were two, but one day, one of her twins simply shut down. He stopped talking and seemed to withdraw into himself. Tammy immediately made an appointment with her pediatrician and, after screening tests, both boys were diagnosed with autism. For years, Tammy coordinated therapists and doctors appointments. She spent her days working hard with each child. The twins are now 12 years old. Both are in regular education classes and both come home with high grades. While one is more along the spectrum than the other, they both speak, are doing well, have friends and join in activities at school. It took years of difficult moments and hard work to get to this point.
Tammy is used to other parents not understanding her “different” children. She lived with the stares when one of the boys had a meltdown in public and the parents that didn’t want to invite her children over to their house. All of this was upsetting, but not as difficult as the stigma Tammy faced from her mother. No matter how much Tammy tries to teach her mother about autism, the answer is always, “My friend has a son with autism and he doesn’t talk. Children with autism are withdrawn, don’t talk and don’t interact. Your children aren’t autistic.” When Tammy talks about meltdown, her mother is sure to answer, “You are just overwhelmed because of work and parenting. Maybe you need to spend more time with the boys.”
Tammy has given up trying to explain or trying to get her mother to understand. She knows that in order to have a relationship with her mother, she needs to keep her mouth shut and not make any waves. She’s glad she has a supportive, involved husband and friends she can talk to about her children’s struggles. But, there are times Tammy wishes she could call her mom to talk over some of the problems her and her children face on a daily basis. She knows she can’t. It makes raising twins with autism even more difficult.
Sometimes, it just takes time for the grandparent to understand and accept a diagnosis of autism. When the diagnosis first occurs, many parents go through a mourning period. They mourn for the child they dreamed of and, after a time, they accept the child they have. Grandparents go through the same thing. They have spent years imagining their grandchildren. They have spent years imagining taking them to the park and having sleepovers. After a diagnosis of autism, grandparents need to realign their dreams to fit the situation. Many times, grandparents will take time to read, learn and understand so they can offer the support their family needs.
When first talking to your family about your child’s diagnosis of autism provide some general information and offer them some books and websites where they can get additional information and read it at their own pace. Too much information all at once can be overwhelming. Set up a time to answer their questions and concerns and discuss their fears or confusion.
If your family still doesn’t “get it” or doesn’t accept the diagnosis, it is your decision to determine the best way to move forward. Some families, such as Tammy’s, decide to keep a relationship with their family but to limit the time they spend together. Now that Tammy’s twins are older, she has found her mother can handle several hours with the twins – one at a time. Tammy coordinates lunch dates so each twin has one-on-one time with their grandmother but at times when they are all together, Tammy or her husband are always close by.
Seeking out support is also important. If you can’t find the support you need from within your family, look for local support groups for parents of children with autism. These groups give you a place where you feel comfortable talking about your daily difficulties as well as celebrating your child’s successes. By sharing stories, you get to learn about how other families deal with different situations, including unaccepting grandparents.
Whether your family accepts and respects your child’s diagnosis of autism, the important thing is to make sure your child is safe and well cared for. You might need to enforce certain rules with your family that are in place for your child’s safety. You might also need to reinforce that your child does not like to be touched or hugged (if this is the case) and ask your family to respect that. Hopefully, in time, your child will develop his own relationship with the extended family – on his own terms.
If nothing works, it might be necessary to set limits to the amount of time you spend with your family. Remember, no matter what, you have the right to make decisions concerning your children. You have the right to not attend family functions if you feel it is in the best interest of your child. Unfortunately, the stigma of autism does sometimes divide families.
Published On: June 10, 2014