"Any advice on how to approach our friends and family to tell them about our son's recent diagnosis of high functioning autism ...or would it be better to say nothing?"
RE: "...would it be better to say nothing?" It would be good for your friends and family to understand High-Functioning Autism (HFA), otherwise they will come to their own conclusions about your son's behavior, which will undoubtedly be way off base.
Aspergers and HFA are often mentioned in the newspapers or on television, but the truth is that, besides remembering Dustin Hoffman's performance in the movie "Rain Man" as an Autistic savant, most people have no clue about what an Autism Spectrum Disorder (ASD) is.
If you’re an “old pro” at parenting a child with Aspergers or HFA, then you probably have had a lot of explaining to do to family and friends through the years. For those of you who are just now starting this journey, here are some things you can do to help family members with their understanding of the disorder:
1. Allow family members to attend Individualized Education Plan (IEP) meetings. In addition, family members should establish a relationship with teachers and be perceived as part of the “treatment team.” Collaboration in this way is critical to school success.
2. Assure others that even though there is no single known cause or cure, HFA is treatable. Although it is a life-long disorder, studies show that early diagnosis and intervention can lead to significantly improved outcomes for kids. With the support and love of family and friends, along with appropriate services, kids with HFA can live full, healthy and meaningful lives.
3. Different circumstances call for different parenting. Explain that while you are trying to give your youngster as normal an environment as possible, there may be things you will do (or not do) for your “special needs” child than you would for other children in the family. For example, there may be different rules and consequences, sleeping arrangements, dietary or safety concerns. If necessary, gently explain that this doesn't mean that you're playing favorites or "babying" your HFA youngster -- you are simply addressing his unique needs and protecting him from unnecessary stress.
4. Don't be offended. Assure family members that your youngster's lack of social interactions with them (e.g., how he may avoid looking them in the eye or be uncomfortable with 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 he often says whatever is on his mind. An HFA kid might bluntly say, "Aunt Rosie is fat" or, when given a gift, "I don’t play this game." He doesn't mean to be offensive -- he is just reporting what he observes.
5. Encourage family members to discuss their fears, disappointment, confusion and concerns. Remember the feelings you, the parent, experienced upon hearing the diagnosis, and realize that other family members will most likely experience similar emotions. In addition to the concern they have for their grandson or granddaughter, niece, nephew, sibling, etc., they also will have concerns for you.
6. Encourage others to expect the best from your youngster. Focus on the youngster's special abilities. Treat him as you would any other youngster or family member to the extent possible. Realize he is more “like” other kids than he is “different.”
7. Give information about HFA on a need-to-know basis. A bombardment of information may cause confusion or undue alarm. For instance, you might want to skip the nitty-gritty details of a GFCF diet and postpone telling stories about HFA children who run away or who still aren't potty-trained by age 8.
8. Offer friends and family a short list of Internet resources. That way they can explore the world of HFA at their own pace. That said, you might want to ask that they not forward you every report they read about Aspergers and HFA, or start a debate about ASD causes and "cures."
9. Provide some tips regarding purchasing gifts, toys or planning outings. Gently remind family members of your youngster's specific sensory issues, phobias or environmental triggers to avoid unpleasant scenes or meltdowns while in their care.
10. Remind everyone the importance of accepting your youngster for who he is, not who they hope him to be. Children with HFA may need more space, more understanding and more patience. Family members may need to interact with your youngster on his own terms. For example, 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.
11. Teach family the necessary skills to assist your youngster 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 youngster's behaviors or actions while you're unavailable.
12. If one or more family members simply don’t “get it,” then suggest a support group. If your extended family has difficulty understanding or accepting the diagnosis, then they should consider getting in touch with a support group in order to hear other families' stories, which can help your family members gain a better understanding of the disorder. They can also attend special events or training opportunities, and if necessary, seek family counseling services.
If you’re an “old pro” at parenting a child with Aspergers or HFA, then you probably have had a lot of explaining to do to family and friends through the years. For those of you who are just now starting this journey, here are some things you can do to help family members with their understanding of the disorder:
1. Allow family members to attend Individualized Education Plan (IEP) meetings. In addition, family members should establish a relationship with teachers and be perceived as part of the “treatment team.” Collaboration in this way is critical to school success.
2. Assure others that even though there is no single known cause or cure, HFA is treatable. Although it is a life-long disorder, studies show that early diagnosis and intervention can lead to significantly improved outcomes for kids. With the support and love of family and friends, along with appropriate services, kids with HFA can live full, healthy and meaningful lives.
3. Different circumstances call for different parenting. Explain that while you are trying to give your youngster as normal an environment as possible, there may be things you will do (or not do) for your “special needs” child than you would for other children in the family. For example, there may be different rules and consequences, sleeping arrangements, dietary or safety concerns. If necessary, gently explain that this doesn't mean that you're playing favorites or "babying" your HFA youngster -- you are simply addressing his unique needs and protecting him from unnecessary stress.
4. Don't be offended. Assure family members that your youngster's lack of social interactions with them (e.g., how he may avoid looking them in the eye or be uncomfortable with 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 he often says whatever is on his mind. An HFA kid might bluntly say, "Aunt Rosie is fat" or, when given a gift, "I don’t play this game." He doesn't mean to be offensive -- he is just reporting what he observes.
5. Encourage family members to discuss their fears, disappointment, confusion and concerns. Remember the feelings you, the parent, experienced upon hearing the diagnosis, and realize that other family members will most likely experience similar emotions. In addition to the concern they have for their grandson or granddaughter, niece, nephew, sibling, etc., they also will have concerns for you.
6. Encourage others to expect the best from your youngster. Focus on the youngster's special abilities. Treat him as you would any other youngster or family member to the extent possible. Realize he is more “like” other kids than he is “different.”
7. Give information about HFA on a need-to-know basis. A bombardment of information may cause confusion or undue alarm. For instance, you might want to skip the nitty-gritty details of a GFCF diet and postpone telling stories about HFA children who run away or who still aren't potty-trained by age 8.
8. Offer friends and family a short list of Internet resources. That way they can explore the world of HFA at their own pace. That said, you might want to ask that they not forward you every report they read about Aspergers and HFA, or start a debate about ASD causes and "cures."
9. Provide some tips regarding purchasing gifts, toys or planning outings. Gently remind family members of your youngster's specific sensory issues, phobias or environmental triggers to avoid unpleasant scenes or meltdowns while in their care.
10. Remind everyone the importance of accepting your youngster for who he is, not who they hope him to be. Children with HFA may need more space, more understanding and more patience. Family members may need to interact with your youngster on his own terms. For example, 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.
11. Teach family the necessary skills to assist your youngster 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 youngster's behaviors or actions while you're unavailable.
12. If one or more family members simply don’t “get it,” then suggest a support group. If your extended family has difficulty understanding or accepting the diagnosis, then they should consider getting in touch with a support group in order to hear other families' stories, which can help your family members gain a better understanding of the disorder. They can also attend special events or training opportunities, and if necessary, seek family counseling services.
More resources for parents of children and teens with Asperger's and High-Functioning Autism:
==> Preventing Meltdowns and Tantrums in Asperger's Children
==> Discipline for Defiant Asperger's Teens
==> Teaching Social Skills and Emotion Management
==> Launching Adult Children with Asperger's: How to Promote Self-Reliance
==> Parenting Children and Teens with High-Functioning Autism
==> AudioBook: Unraveling The Mystery Behind Asperger’s and High-Functioning Autism