Discussing Concerns with Family Members
I am concerned that my grandson may have signs of autism, but I am uncomfortable bringing this up with my son and daughter-in-law. Do you have any suggestions about how best to approach them?
Answered by Peggy Halliday, MEd, BCBA (Virginia Institute of Autism)
and David Celiberti, PhD, BCBA-D (President, Association for Science in Autism Treatment)
It is natural to be unsure of how to share your concerns with your grandson‘s parents. As is the case with many concerned family members, you may worry that such a discussion may not be well received. If autism is a possibility, you would not want to delay screening and referral for possible evaluation and services, because this may waste valuable time during which intervention can be most beneficial for your grandson. Even knowing that best outcomes are associated with early diagnosis and intensive intervention, it still may be difficult to talk to your son and daughter-in-law if they have not expressed concerns to you. As a grandparent, you have already raised at least one child, so you probably have a good sense of what is typical in child development, and what is not. You may feel that your grandson is not making expected gains or may appear delayed in some areas such as communication or play relative to other children his age. This may create in you a sense of urgency which must be balanced with the need to support your son and daughter-in-law.
There are a number of important things to consider. The way in which you approach your son and daughter-in-law will depend in large part on the quality of your pre-existing relationship and on the nature of how you communicate with one another. You may possess a relationship where difficult issues are frequently and easily discussed. On the other hand, this may not typify the type of relationship that you have. Regardless of your relationship, it is important that you bring this up from a place of love and concern, rather than judgment and blame. Many parents who have been carefully and respectfully approached by a relative later admit that they already had concerns of their own, and it was a relief to discuss them with someone else close to the child.
We would like to offer some concrete suggestions that may increase the likelihood that your discussion will be constructive:
- Plan your discussion ahead of time. Find a time and place when you will not be interrupted.
- Take some time to think about what you want to share and how you want to frame your concerns. You might begin by commenting on the child‘s strengths and praising the parents' love and dedication to their child. It is important not to appear judgmental.
- Try to keep the conversation free flowing. You may want to ask a few questions that will allow the parents to express their own concerns, if they have them (e.g., “I noticed that Billy became very upset when the phone rang. Has that happened before?” or “Does he seek you out when he is upset?”).
- The role you take in the child‘s life depends, of course, on geographic proximity, but offer concrete, practical help whenever possible. For example, you might offer to babysit siblings while parents pursue evaluation of the child, or offer a respite weekend of childcare so that your son and daughter-in-law might have time to discuss the situation without interruption. Whatever assistance you offer, the important thing is that your grandson‘s parents perceive it to be helpful,so try and gauge their reactions carefully.
- Avoid labels and technical terms, which may trigger fear or upset with the parents. Focus instead on discussing milestones, which are observable indicators of a child‘s development and accomplishments.
- In some cases, it may be beneficial to think about the discussion as a series of tiny conversations. This would be more appropriate if you have frequent contact with your son or daughter-in-law. It may then be helpful to share some observations that may provide a backdrop for later discussion (e.g., “Little Peter seems overwhelmed by noise levels” or “I have noticed that he does not seem to know how to use words to get his needs met.”). It may also be helpful to discuss observations surrounding worrisome or absent peer or sibling interaction.
- Emphasize the need to simply get any concerns checked out in order to “rule out” anything serious or to get some guidance in how to promote skill development. You might follow this up by mentioning that the earlier a potential problem is recognized and addressed, the easier it is to help the child.
Most parents begin to become concerned that something may be wrong when their child is between the ages of 12 and 18 months. If the parents are beginning to realize a potential problem exists, you want to gently urge them not to delay a preliminary assessment and evaluation. You should never take for granted that developmental concerns will automatically be addressed during routine visits to the pediatrician. Refer parents to resources such as books and good websites they can explore on their own (we emphasize the word “good” as there is a tremendous amount of misinformation about autism both in the media and on the Internet, particularly many false promises about autism treatment). The most helpful websites at this stage are typically the ones that discuss developmental milestones. Parents often know when to expect their infant and toddler to sit up or take their first steps, but they do not know when they should begin to babble with inflection, point to things they notice or want, imitate gestures, or show interest in another child. The following websites include milestones checklists, booklets, and charts, and a wealth of other helpful information.
Centers for Disease Control and Prevention: The Act Early website contains an interactive and easy- to-use milestones checklist you can create and periodically update for children ages three months through five years, tips on sharing concerns with the child‘s doctor, and free materials you can order, including fact sheets, resource kits, and growth charts.
Autism Speaks: The Autism Speaks website includes an Autism Spectrum Disorder Video Glossary of video clips designed to help parents and professionals learn more about the early red flags of autism, information about how autism is diagnosed, a resource library, and a free 100 Day Kit designed to help families of newly diagnosed children make the most of the first 100 days following a diagnosis of autism.
First Signs: The First Signs website contains a variety of helpful resources related to recognizing the first signs of autism spectrum disorder, and the screening and referral process. There is a directory of local resources for at least eight states and we think it is likely that that the number of states represented will increase over time.
American Academy of Pediatrics (AAP): The AAP website contains information for families, links to many other web sites, information about pediatrician surveillance and screening, and early intervention. This site contains great tools for pediatricians, as well as parents.
Association for Science in Autism Treatment (ASAT): On the ASAT website, you will find extensive information about the scientific support (or lack thereof) behind the full array of treatments proposed for autism, research reviews, articles and guidelines on how to make informed choices and weigh evidence in selecting treatment options, a section of frequently asked questions such as the one you asked, information about upcoming conferences of interest, and links to helpful sites and other science-based organizations.
In summary, we think it is commendable that you desire to share your concerns in a sensitive way with your son and daughter-in-law. We hope that this advice has been helpful to you, and we wish the best or your grandson‘s future. In the event that your concerns are founded and your grandson receives a diagnosis of autism, we recommend that your family refer to the 100 Day Kit from Autism Speaks and learn all they can about applied behavior analysis, the treatment for autism that has the most compelling scientific support. The ASAT website of course would be an incredible resource at that point as well.