This month’s ASAT feature comes to us from Peggy Halliday, MEd, BCBA and David Celiberti, PhD, BCBA-D. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!
I am concerned that my two year old 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?
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 or may cause some discomfort or tension in your relationship. 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 the 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 their 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. Also, you may not have day to day contact so slower development of skills may be more apparent to you. This may create a sense of urgency in you that should be balanced with the need to support your son and daughter-in-law.
There are several important considerations. 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 positive and constructive.
Planning Ahead:
- 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 or focused only on the concerns.
- Plan your discussion ahead of time. Find a time and place when you will not be interrupted. It may be best when the child is with another caregiver.
- The role you take in the child’s life depends, of course, on geographic proximity, but be poised to 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.
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 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?”).
- 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 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 and support 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.
Other Considerations:
- 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 good websites and resources 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.
- If the child is in a daycare, speak to his or her teachers and directors about the child’s 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 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.
- 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 web sites, 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 offer 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.
About The Authors
Peggy Halliday, MEd, BCBA, is a Board Member of ASAT, and serves as the JCH Director of School Consultation at the Virginia Institute of Autism (VIA) in Charlottesville, Virginia, where she has been a practitioner since 1998. Peggy oversees trainings for parents and professionals and provides consultation to public school divisions throughout Virginia. She also oversees BCBA and BCaBA training experiences. In addition to serving as a presenter at state and national conferences, including the Organization for Autism Research (OAR), Commonwealth Autism Service (CAS), and Association for Behavior Analysis International (ABAI) Peggy was selected as an autism expert for the “how-to” website monkeysee.com. Peggy has been on the board of ASAT since 2010 and serves on the Public Relations Committee.
David Celiberti, PhD, BCBA-D, is the part time Executive Director of ASAT and Past-President, a role he served from 2006 and 2012. He is the Co-Editor of ASAT’s newsletter, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis, and early childhood education, and been an active participant in local fundraising initiatives to support after school programming for economically disadvantaged children. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to applied behavior analysis (ABA) at both the undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.