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THE VOICE
Anne Arundel County Chapter

Volume 6, Issue 5

  Page 7

Tips for Extended Family and Friends:Helping the Parents  of an Autistic Child
From the "One Mom's View of Autism" website


Just as the parents and siblings must make adjustments when a child is diagnosed with autism, also affected are friends and extended family members.  Here are tips for extended family and friends who want to help parents of a child recently diagnosed with autism. Most of the tips also apply beyond the period following the diagnosis.

When parents get a diagnosis of autism, they grieve, often very intensely and feel very isolated. Probably no one else in the family has an autistic child and they often feel quite alone. Unless your family has other members already diagnosed with autism, the diagnosis may also be a mystery to extended family and friends.

How can you help? Here are some "Do's and Don'ts":

DON'T tell them you understand what they are going through, because you don't.

DON'T tell them that everything will be all right.  Yes, they probably will adjust in time, but they know their lives will never again be the same.

DON'T tell them that God must have chosen them to have this special child if you don't know their religious beliefs. Even if you share the same religious beliefs, remember that it takes time for the parent to accommodate the news of their child's disability into their beliefs and different parents view God's role in their child's disability differently.

DON'T question the diagnosis. Your notion of autism may be based on old, outdated ideas. On the receiving end, this feels as if you are dismissing their grief.

DON'T let your discomfort lead to you to make comments such as "I could never deal with this" or "Wouldn't you have rather had a child with Down Syndrome?" Also try to remember that parents of recently diagnosed children with autism may be quite sensitive to hearing bragging about your child's accomplishments or complaints about "normal" childhood behaviors, like a child nagging you when their child is nonverbal. Remember that their feelings are easily bruised at this stage and these comments make them feel that they and their child don't fit in and no one understands.

NEVER joke to a parent of a nonverbal child that you wish your own child would just shut up or couldn't talk.

DON'T take it personally if they seem distant after their child is diagnosed. They are probably dealing with a lot of strong conflicting emotions that they may feel you don't understand. For some parents, one of these emotions is difficulty being around regular kids because it reminds them of the child and family that they have just "lost". Mixed with this feeling is envy and guilt. It is normal during the initial grieving process but will gradually fade.

DON'T tell them "you're so strong" or ask "how do you do it? ". We  are human like everyone else. Sometimes it can

be very difficult and we have no idea how we do it.

DON'T say "but all kids do that!" or "but normal kids do that!" Yes, kids with autism do have some behaviors that other children have, but the degree and intensity can be very different, making the parenting experience very different.

DO let them know that you care about all of them and you want to help. This is the most important thing.

DO ask them if there's anything you can do. If they aren't comfortable with a certain type of help, accept that and don't push it.

DO ask if you can baby-sit, if you are comfortable doing so. Some families will be pleased with this offer and accept. Other families won't be comfortable having you baby-sit, especially if the child has aggressive behaviors. If they aren't comfortable having you baby-sit their child, do not take it personally.

DO allow yourself to grieve too. The autism will mean changes in the child's relationship with you. Even if the child is very able, the relationship will be different than it would have been otherwise.

DO ask about the child with autism. If there is a sibling, try not to give the appearance that you favor that child. It will take more work to establish a relationship with the autistic child, but family and friends are important for ALL children.

DO remain patient if the child has unusual, strange, aggressive or tantruming behaviors. These behaviors are also very difficult for us parents to cope with.  Under NO circumstances suggest that the parents are somehow responsible for these behaviors! If the parents seem defensive in this area, it is probably because we are often stared at and criticized when our children's behavior differs from what is expected.

DO be flexible about family traditions and gatherings. Some children with autism have very limited attentions spans and find a different house with many people talking very overwhelming. Perhaps smaller and more informal family gatherings would be easier for that child.

DO let the parents know that there are many, many other parents with children with autism who've experienced the same thing. They can be reached through local Autism Society chapters or over the Internet. If they aren't able to take this step yet, don't push.

DO try to keep yourself informed about autism . It will help you understand the child and his/her family's experiences better. There are  excellent books. However, don't push a particular therapy or treatment for the child. Families chose the therapies and treatments for their child on an individual basis. NEVER state that a child is not doing well because the parents didn't do a specific treatment. There is a huge variation within the autism spectrum and different children respond differently to different treatments.

Above all, let them know that you care and you want to help. It is OK to say that you're not sure what to do (neither are they!) but this caring and listening will help you establish a new, strong relationship with them.

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