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?
Peggy Halliday, MEd, BCBA
David Celiberti, PhD, BCBA-D
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 will not be well received. You may fear that it can cause some discomfort or tension in your relationship. If autism is a possibility, you would not want to delay screening which could result in a referral for an evaluation and services. Waiting may waste valuable time during which intervention can be most beneficial for your grandson. Even knowing that better outcomes can come from early diagnosis and intensive intervention, it still may be difficult to talk to your son and daughter-in-law if they have not expressed their concerns to you directly.
As a grandparent, you have already raised at least one child, so you probably have a good sense of what may be typical behavior 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 compared to other children his age. Also, you may not have day to day contact with your grandson, so slower development of skills may be more obvious to you. These impressions may create a sense of urgency for you.
There are several important considerations in planning for this discussion. Perhaps the most important consideration is to weigh the pros and cons of talking to your son and daughter-in-law vs. the pros and cons of not talking to them. Although it may seem prudent to wait, the risk of delay to diagnosis and treatment is potentially much greater than the risk of harming the relationship.
The way in which you approach your son and daughter-in-law will depend in large part on the quality of your relationship and on the nature of how you communicate with one another. In your relationship, you may already discuss difficult issues frequently and easily. On the other hand, this may not describe the type of relationship you have at all. Regardless, 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 dis- cuss them with someone else close to their child.
We would like to offer some concrete suggestions that may increase the likelihood that your discussion will be positive and constructive.
- Plan your discussion ahead of time. Take some time to think about what you want to share and how you want to frame your concerns. It may be helpful to preview a screening tool such as the M-Chat.
- Find a time and place when you will not be inter- rupted. It may be best when the child is with another caregiver.
- 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 or focused only on the concerns.
- The role you take in the child’s life depends, of course, on geographic proximity, but be poised to offer concrete, practical help whenever possi- ble. For example, you might offer to babysit sib- lings 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.
Having the Conversation
- Try to keep the conversation free flowing. You may want to ask a few questions that will allow the parents to express their concerns if they have them. For example, “I noticed that Billy became very upset when the phone rang. Does the phone ringing bother him? ” or “ Does he seek you out when he is upset? “.
- Avoid labels and technical terms, which may trigger fear or upset from 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 approach 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 provide a backdrop for later discussion. For example, “Little Peter seems over- whelmed by loud noise. “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 problematic or absent social interac- tions with peers or siblings.
- Emphasize the need to simply get any concerns checked out to “rule out” anything serious or to get some guidance and support in how to pro- mote 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 start to become concerned that something may be wrong with their child be- tween the ages of 12 and 18 months. If the par- ents are beginning to realize a potential problem exists, you want to gently urge them not to delay screenings and/or evaluations. It may also be helpful to have contact information on hand within your local state/town. Often parents can feel overwhelmed due to not knowing what the first step would be. Having this information ready for whom to contact and how to schedule a screening may reduce some of the stress in hearing the news.
- You should never take for granted that develop- mental concerns will automatically be addressed during routine visits to the pediatrician. Sometimes they are not. Refer parents to good quality resources they can explore on their own, such as our website. We emphasize the word “good” as there is a tremendous amount of misinformation about autism both in the media and on the Inter- net, particularly many false promises about au- tism treatment. We share some of these resources below. The most helpful websites at this stage are typically the ones that discuss developmental milestones. Parents often know when to expect their infants and toddlers to sit up or take their first steps, but they do not know when they should begin to speak in 2 – 3 word statements, point to things they notice or want, imitate gestures, or show interest in another child.
- If the child is in a daycare, his teachers and directors have relevant information about his progress. They should be keeping records on how the child is developing in different areas such as social interaction, verbalization, etc. They are also a good resource to use to help evaluate your child in a school setting.
The following websites include milestones checklists, booklets, and charts, and a wealth of other helpful information.
- Association for Science in Autism Treatment (ASAT) : On the ASAT website, you will find an extensive list of proposed treatments for au- tism – each treatment has a scientific research summary and recommendations based on level of effectiveness in treating autism; guidelines and articles on how to select the best treatment for your child; answers to frequently asked questions by parents and caregivers; and links to helpful sites and other science – based organizations.
- 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.
- 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 that number is likely to increase over time.
- American Academy of Pediatrics (AAP): The AAP website contains information for families, links to many other websites, information about pediatrician surveillance and screening, and early intervention. This site contains great tools for pediatricians, as well as parents
- Autism Speaks: The Autism Speaks website includes an Autism Spectrum Disorder Video Glossary of clips designed to help parents and professionals learn more about the early ‘red flags’ of autism, information about how autism is diagnosed, and a resource library. They also of- fer 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
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 ad- vice has been helpful to you, and we wish the best for your grandson’s future. If your concerns are well founded and your grandson receives a diagnosis of autism, we recommend that your family 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 excellent resource at that point as well.
Please visit our Clinical Corner section to read articles related to young children with autism:
- How do I teach game playing skills to children with autism?
- How do you teach an 18-month old with autism?
- What are some strategies for getting my child to go to bed and sleep through the night?
- How can I help my child learn to play with a friend during play dates?
- How likely is it that I could have another child with autism?
- How do I explain my decision to use science-based treatments for autism when friends and relatives often insist I try something new?
- How to manage the impact of child with a disa- bility on siblings?
Please read an overview of early intensive behavioral intervention and visit our Research Synopses section to learn more about early intervention research. A few links are shared below:
- Behavioral intervention in mainstream preschool settings
- EIBI in Community Settings: Public preschool and kindergarten
- A systematic review of early intensive interven- tion for autism spectrum disorders
- Early intensive behavioral intervention: Out- comes for children with autism and their parents after two years
- Systematic review of early intensive behavioral interventions for children with autism
Citation for this article:
Halliday, P., & Celiberti, D. (2018). Clinical corner: Discussing concerns with family members Science in Autism Treatment, 15(2), 14-17.