Learning that a grandchild has been diagnosed as autistic can be devastating for grandparents. Although learning that a grandchild has special needs is always stressful, a diagnosis of autism seems to be extra scary. Autism is often poorly understood, and misunderstandings may further complicate the process of dealing with the diagnosis. In their distress, grandparents may say or do something that will damage their relationship with the grandchild's parents.
To prevent that from happening, and for the good of their grandchild, it is essential that grandparents take steps toward understanding autism.
Understanding Autism Basics
Here are some facts that are crucial for grandparents to know:
- Autism is not a single condition, but a group of conditions with some symptoms in common. The commonly used term is Autism Spectrum Disorders (ASD).
- One child's case can be very different from another's, so grandparents shouldn't panic or jump to conclusions about what the diagnosis means for their grandchild.
- No one knows what causes autism, but research suggests that both environmental and genetic factors may play a role.
- Autism is not a new disorder. It has been recognized for close to a century but at first was considered to be related to childhood schizophrenia.
- The number of autistic children appears to be increasing, but the rise may be attributable to differences in the way we diagnose autism.
What Grandparents Should Not Do
The period immediately after a grandchild's diagnosis is critical. While there are some things that grandparents should do, it's even more crucial that grandparents avoid certain reactions. These include:
- Don't over-react, especially in the presence of the grandchild and his or her parents. Keep your emotions under control.
- Don't doubt the diagnosis. If the parents accept the diagnosis, questioning it might be very stressful for them.
- Do not say anything that could be construed as blaming or placing responsibility.
- Do not base your expectations for your grandchild on movies or television shows, which may be inaccurate or show just one of the many forms that autism can take.
- Be very careful about relaying information that you have heard or read about autism, as controversial and possibly unsound information is abundant.
- Don't make rash promises about financial support if you are already financially stressed. You'll just cause bad blood in the family if you have to renege on those promises later.
What Grandparents Should Do Immediately
Don't hesitate before doing the following:
- Express your love and support. The proper theme is, "We'll get through this together."
- Treat your grandchild the same unless the parents ask you to do something differently. If you babysit for your grandchild, continue to do so.
- Do inform yourself, but stick to highly reliable sources. Start with these ten basic facts about autism. Then ask the parents to share information, go to the website of a major hospital or visit the autism pages of the National Institutes of Health. Read A Grandparent's Guide to Autism from Autism Speaks, which offers many resources for families.
Continue the process of educating yourself. If possible, attend lectures, seminars or conventions for families dealing with autism, ideally with other members of the family.
Figure out how you can best assist your grandchild's family. Offering extra assistance is fine, but this should be done cheerfully, not with a tragic air. You might say something like, "Do you need some extra help while you figure things out?" Grandparents can run errands, cook meals, do laundry and carry out a host of other tasks that burden parents. If the autistic child has siblings, the grandparents should continue to spend time with them, as well as with any other grandchildren. Balancing the needs of all members of the family is a difficult but crucial task.
Watch Your Words
Learn the lingo, and follow the lead of the parents in what terminology they prefer:
- Some families prefer ASD to autism.
- Some object to saying that a child "has" autism, because it sounds like an external condition rather than a part of the child's identity. They prefer "autistic child / person / individual."
- Others object to the "autistic child" terminology because they do not want autism to be a primary part of their child's identity. They prefer "child with autism" and do not mind constructions that involve "having" autism.
- Some prefer that non-autistic children be referred to as "neurotypical" rather than "normal," embracing the idea that there are many kinds of "normal."
- Almost everyone recommends that autism not be referred to as a "disease." It is a "disorder." Some may prefer the less loaded word "condition."
These distinctions may seem unimportant to you, but they may be important to your grandchild's parents.
The majority of grandparents -- 72% -- responding to a survey by the Interactive Autism Network (IAN) said that they are involved in treatment decisions for their autistic grandchildren. Of course, involved grandparents are more likely to respond to such surveys. Still, many grandparents will want to be involved. Perhaps you may want to ask if you can be included in some of the medical consultations. If so, your role, at least at first, is that of a silent listener. If there is something you really want to ask, clear it with the parents first.
As the parents struggle with choosing treatments, therapies or special schools, the topic of financial assistance may arise. How you respond will depend to a large degree upon your financial situation, but pledging a specific amount, even a small one, toward your grandchild's treatment will probably be greatly appreciated by the parents. The IAN survey reported that a quarter of grandparents make such contributions for the needs of an autistic grandchild.
Grandparents who have the time and resources may want to give something to the autism community. Autism Speaks lists a number of ways to help that are suitable for grandparents. Participating in a walk event is a good way to involve the whole family.
A Special Role for Grandparents
Grandparents are often the first to notice the early signs of autism. Of the grandparents participating in the IAN survey, 30% said that they were the first to notice indicators of autism. Grandparents are often better equipped than parents to notice atypical behavior. They have had intimate experience with more young children and thus may be more prepared to notice when something is different.
In some cases, finally receiving a diagnosis can be therapeutic for the whole family. Grandparents often become closer to a grandchild with ASD when they understand the disorder more completely. Many report that sharing an autistic grandchild's unique perspectives has expanded their own outlooks. In addition, 90% of those responding to the IAN survey said that they had become closer to the parents of their autistic grandchild as a result of their shared experience.