ASD…It’s a Family Affair: 6 Tips for Professionals
By Jill Britton Scercy, MS, LMFT
Autism Asperger’s Digest March/April 2014
When you begin working with someone who has autism spectrum disorder (ASD), it is important to realize that he is an individual within a unique group. This group, whatever it may look like, is his family and they, too, deserve special treatment and consideration.
The family functions as a system, and each member is affected by the individual with ASD in his own unique way. The individual with ASD often becomes the center of attention out of necessity. Family members are thrust into a world of educational modifications, treatment options, scheduled therapies, and an alphabet soup of acronyms—this is in addition to continuing with the roles and responsibilities of typical family life!
While there is no written instruction manual for working with families due to their unique presentation, it is important to consider the following.
Recognize the family’s uniqueness and the special child they have brought to you. Give them a chance to educate you about what is unique about their child and family. Take time to get to know and understand each family member and acknowledge the strengths that each brings to the family’s dynamic. Begin to understand the impact of this child on his family and be sure to take into account the journey the family has been on prior to the diagnosis. They may have been searching for answers for years and fighting to have professionals hear their concerns. They may have thought (or been told) that it was simply “a speech delay” and be overwhelmed by the complexities of this lifelong disorder. Or they may have little understanding of the subtle symptoms that have suddenly become a label. Understandably they are experiencing fear of the unknown, and they may be grieving for the child they thought they would raise. When sharing the diagnostic information be sure to convey the message that “He is the same sweet lovable child he was this morning before he received this diagnosis,” because many things do change for a family once they get this news.
Accept that some families may take longer to process the information you are providing, and be sensitive about overwhelming families with too much, too soon. Let each family be your guide as to how much information they can absorb at one time.
Take time to validate the family’s questions and feelings. Although you do not have a crystal ball, and you cannot answer all the questions about what the future will bring, you can let them know that the questions they’ve asked are ones that many in their position want answered. Listen carefully to their questions and answer with honesty and support. You can let them know that it is okay to feel sad, frustrated, and scared at times—but that they will also feel happy, excited, and proud of their child’s accomplishments along the way. At the time of diagnosis, let this family know that they have already been doing many things well and this has helped their child adapt to his unique challenges. The fact is even before understanding the diagnosis, most families know their child and understand little things they must do to make each day a little easier.
During our evaluation process, the family is interviewed by a parent consultant while the child is going through a series of assessments. When the clinical team meet to discuss their impressions, the parent report is given at least as much weight as the child interaction in determining a diagnosis. When talking with the family, it is important to validate specific behaviors and challenges they see that may not have been observed in a diagnostic setting. We often say to a family, “Although we did not observe this today with your child, we can certainly understand how difficult it can be at times with him.” Many times we are told by families that we are the first professionals to believe them when they reported certain concerns.
By sharing your knowledge of interventions and strategies at a level that meets their specific needs and understanding, you will be increasing the family’s ability to be their child’s best advocate at home, at school, in faith-based worship settings, and in relationships with peers and extended family members. Help them gain the confidence, which they will need for many years to come, to go to battle for their child’s best interest and to always remember that they know their child better than anyone else. Emphasize that little steps made each day can bring huge long-term results. Remind them that they are in a unique position to make a positive, lifelong difference in their child’s life. Let them know that they will encounter many professionals who suggest different options for interventions and that the family should explore options to find what feels best for their child and family situation.
Encourage all family members to be a part of the treatment as much as possible. The mother is typically the nurturer, appointment organizer, and overall make-it-happen mechanism for a child with ASD. The father tends to want to “fix” things and may have a longer adjustment period to accepting the diagnosis. As the mother is busy juggling the day to day, the father often worries about the future. Siblings are the longest relationship the child with ASD will have. Yet they sometimes feel left out as their sibling is carted to many “special” appointments. Encourage the father, siblings, and extended family to also learn about the child’s strengths and challenges so they will feel more a part of the accomplishments. Point out strengths that the family has that are aiding the individual with autism. This will strengthen the family as a unit, and it will help provide the best possible outcomes.
Recently we began to work with a three-year-old with ASD. His mother and older sister also attend the sessions. During the sessions, the parent consultant spent time talking directly to the 10-year-old sister about the way the autism specialist was interacting with her brother (while watching through a two-way mirror). Later she was encouraged to join in play with him. This will not only increase her understanding of her brother but will increase the likelihood that she will practice these strategies with him at home. Professionals come and go, but an individual is blessed to have the continuity, stability, and security of family members. Help family members embrace this role.
Remember to ask about other family members. I call this the “check-in” during treatment. I will often turn to the mother who brought her child and say, “So is dad noticing the progress [child’s name] has made?” or “Were you able to share with dad that [child’s name] was able to request a toy?” I will sometimes ask, “So are there any questions that dad has about what we have been working on?” or “Is her brother asking any questions about her behaviors?” Even if the other members cannot come to the sessions, this gives a feeling that they are included and their thoughts matter.
Offer support as you work with the family and help them connect with other families who are living with autism. There is something powerful about meeting regularly with other families who have dealt with some of the same challenges and have triumphed. Getting a pulse on the schools, private therapies, and support services in the area is also invaluable—and a support group is the perfect place to do this for many. However, a support-group atmosphere does not meet the needs of every family. I was reminded of this once when I talked to a group of professionals and parents about the importance of getting families involved in a support group. A mother of a young child raised her hand and let me know that this was not a good fit for her in her early years of understanding the diagnosis. She said that everyone tried to get her to join, and when she went she only got more overwhelmed. She preferred to seek support in a more individualized setting.
One family I was working with had twin two-year-olds, one of whom had just been diagnosed with ASD. Their mother called me one morning to let me know she was having a really difficult time. Her two-year-old kept stripping off her clothes in public, pulling out her eyelashes, and responding violently to transitioning. After a conversation on the phone about ideas to help, I offered to have her come to our office to pick up some pictures I made for her to help with transitions. I was lucky to have staff available to watch her children in the lobby while I took her back to our break area and offered her a cup of coffee where we chatted for about 20 minutes. She told me later that it was the first cup of coffee she had shared with someone in a very long time. The support our staff offered that morning helped her gain strength to make it through the day.
Once families have come to the point in their journey that they are able to, encourage them to give back to other families in the autism community (e.g., parent mentor, position in local support group). This can be therapeutic and cathartic for family members and can help the givers as much as the recipients.
Help families recognize the small as well as large accomplishments along the way, as this can give the family the strength needed to face the next hurdle. Certain goals for the child with ASD may not have been accomplished—but many have. And more than likely, incremental progress has been made on most goals they are currently working on. It can be helpful to point out the changes by giving them an example. For instance, “Wow, did you see him looking at the clinician when he needed help? Remember when he would just cry or get frustrated?”
Families need to be reminded of how far they have come. It is often difficult for a family who is in the middle of everything to see the extent of the progress their child has made over time. Discuss the progress the family has made together, and review the individual growth of each family member.
When you are a professional working with a family who has a member with ASD, remember that this diagnosis is really a part of the entire family. Each member deserves acknowledgement and recognition for their role in helping their family member be understood and integrated into the community to the best of their ability. There is no doubt that including all family members in the treatment will provide additional support and a better overall outcome for the individual with ASD.
Jill Britton Scercy, MS, LMFT, is the assistant director of the Greenville office of the UNC-Chapel Hill TEACCH Autism Program. She is a licensed marriage and family therapist and the mother of three boys, one of whom is on the spectrum.
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