Telling The Family: So This Is Autism
You've just learned your child has autism. On top of dealing with your own feelings of shock -- or even relief that you finally have an answer -- you also have to find a way to explain the autistic diagnosis to your relatives. Here's some help.
"Autism is so in the culture now that any 'stigma' that might have existed is long gone," Jeffrey Cohen, father to a child with Asperger's Syndrome as well as the author of the books The Asperger Parent: How to Raise a Child with Asperger Syndrome and Maintain Your Sense of Humor and Guns A' Blazing: How Parents of Children on the Autism Spectrum and Schools Can Work Together Without a Shot Being Fired. He emphasizes the importance of telling close relatives -- grandparents, aunts, uncles, etc -- right away. "It's always been my experience that people treat Josh better once they understand why he might react differently than most to a situation," says the New Jersey-based Cohen.
Helping your family understand autism
Carol Harrison, EdD, a professor at Stephen F Austin State University in Nacogdoches, Texas, has focused her research on children with autism. "Relying on others to provide support, assistance or just a listening ear may best be provided by a family member that has a vested interest and love for the child," she says.
Following are suggestions from Harrison, Cohen and others when it comes to telling family members and friends that your child is autistic.
Give information about autism on a need-to-know basis. "A bombardment of information may cause confusion or undue alarm at this point," says Harrison. For example, you might want to skip the nitty-gritty details of a GFCF diet. and hold off telling stories about autistic kids who run away or still aren't potty-trained at age 8.
Offer your friends and relatives a short list of Internet resources. That way they can explore the world of autism at their own pace. (And of course, we suggest checking out Signs of autism and everyday life with an autistic child .) That said, you might want to ask that they not forward you every report they read about autistic kids, or start a debate -- or one-sided conversation -- about autism causes and "cures."
Encourage family members to discuss their fears, disappointment, confusion and concerns. "Remember the feelings you experienced upon hearing the diagnosis, and realize that other family members will most likely experience similar emotions," Harrison says. "In addition to the concern they have for their grandchild, niece, nephew, sibling, etc. they also will have concerns for you!"
Don't be offended. Assure family members that your child's lack of social interactions with them -- how the child may avoid looking them in the eye or be uncomfortable with/resistant to the usual hugs or other physical contact -- is simply par for the course and not a personal affront. The same goes for a lack of other social graces, and how they often say whatever is on their mind. An autistic kid might bluntly say, "That lady is fat" or, when given a gift, "I already have this DVD." They don't mean to be offensive -- they are just reporting what they observe.
What if the family doesn't get it? Cohen says if your family might have difficulty understanding or accepting the diagnosis, he recommends getting in touch with a support group like ASPEN (aspennj.org). "Hearing other families' stories can help chart your course," he says. Consider becoming involved with local support groups, attend special events or training opportunities. If necessary, seek family counseling services.
Remind everyone the importance of accepting your child for who he or she is. Not who they hope them to be, or the sort of neurotypical child they're used to. Kids with autism may need more space, more understanding and more patience. Family members may need to interact with your child on his or her own terms: don't insist on hugs or other physical contact, don't tease (even good-natured joking), and unless told otherwise, defer to mom and dad for any concerns, problems or discipline issues.
Provide guidance in purchasing gifts, toys or planning outings. Gently remind family and friends of your child's specific sensory issues, phobias or environmental triggers to avoid unpleasant scenes or meltdowns while in their care.
Allow family members to attend Individualized Education Plan (IEP) meetings. "In addition, family members or other direct caregivers should establish a relationship with educators and be perceived as a part of the 'team' [for your child]. Collaboration is critical to school success," Harrison says.
Teach relatives the necessary skills to assist your child or care for your child in your absence. Even if this care would only be needed on an emergency basis. Require family members to maintain and stick to schedules, special diets and routines. Also leave a list of service providers who can be contacted if the family caregiver has concerns or questions regarding your child's behaviors or actions while you're unavailable.
Practice patience. For instance, if your child is agitated or upset, help them to realize that there is likely to be a very good reason why he's sad -- even though he or she may not be able explain. Patience really is a virtue, in terms of both attempting communication as well as accepting that there are some quirks or concerns they might never understand.
Different circumstances call for different parenting. Explain that while you are trying to give your child as normal an environment as possible, there may be things you will do (or not do) for your little autistic one than you would for other kids in the family. For instance, there may be different rules and consequences, sleeping arrangements, dietary and/or safety concerns. If necessary, gently explain that this doesn't mean that you're playing favorites or "babying" your autistic child -- you are simply addressing his unique needs and protecting him from unnecessary stress.
Encourage others to expect the best from your child. "Focus on the child's special abilities," Harrison says. "Treat the child with autism as you would any other child or family member to the extent possible. Realize they are more like other children than they are different."
"Most importantly, assure others that even though there is no single known cause or cure, autism is treatable," Harrison says. "Although autism is a life-long disorder, studies show that early diagnosis and intervention can lead to significantly improved outcomes for children. With the support and love of family and friends, along with appropriate services, children with autism can live full, healthy and meaningful lives."
More autism resources for families