HOW FRIENDS & EXTENDED FAMILY CAN HELP

Parents of a child with autism or Asperger's syndrome will face many challenges in the years to come. Extended family, friends of the family and concerned others can make a huge difference if they provide the right kind of support. Sometimes people can actually create stress and problems for both the parents and the child with an Autism Spectrum Disorder, when they are trying to help. This fact sheet provides some pointers on effective ways to support a family on its long journey ahead.

Get informed about Autism Spectrum Disorders

1. Learn as much as you possibly can. The fact sheets on this website are an excellent start but ready widely as there are different views on many aspects of early intervention. There are also many useful books available which your nearest autism association should be able to recommend. It is surprising the number of times that friends or extended family don't actually research the condition involved and try to apply the usual expectations and behavioral strategies that work with 'neurotypical' kids - those without autism or Asperger's. This can actually undo the intensive work the parents are doing with their child, as a consistent approach by everyone is crucial to help the child's development.

provide the parents with some respite

All parents love to have a respite from parenting - this is especially the case when an Autism Spectrum Disorder is involved. Offer to baby sit regularly, even if it just for two hours so the parents can recharge their batteries. It will be best if you are familiar with the child's needs and are keen to interact with the child in a way that is consistent with any therapies and interventions in place. For example, punishment or yelling at children with autism or Asperger's is highly unlikely to work, and there will be definite ways you will need to respond to challenging behaviors. Also, there may be special diets in place which you may think are nonsense, but may be very important for managing the child's behavior.

learn how to interact with the child

Children on the autism spectrum often don't communicate well, behave inappropriately and may have an intense interest in very narrow fields of interest. It can be heart-breaking for parents when grandparents and friends virtually write off their son or daughter as a problem child or wilfully disobedient. In some ways, Autism Spectrum Disorders can be likened to an 'invisible disability'. If the child had a physical deformity, we are much more inclined to feel empathy and recognize the courage and strength the child displays in coming to terms with a disability. But a child with autism or Asperger's syndrome looks normal so we naturally apply normal expectations.

Parents learn to see beyond the behaviors and recognize their child's courage and effort in learning how to fit in to a world they struggle with. It can be a huge source of support for them when others share this view!

understand the disruptions you may cause

Children on the autism spectrum usually thrive on consistent routines and struggle with any changes, unpredictability or surprises. Your spontaneous visit to the house can cause emotional outbursts. Until your visit becomes part of the routine, the child can find visiting your house stressful and anxiety-provoking. Talk with parents about the things you can do to establish yourself in regular routines with the child.

At times the parents may decline invitations to family events, or not allow you to visit. Don't take these personally. There will simply be times that the parents know their child will feel overwhelmed by a change to routine and it will be too stressful for both parents and the child.

Change your expectations

Grandparents will particularly have certain expectations of their grandchildren - cuddles, reading them bedtime stories and playing regular games. All of these may never happen and it is normal to feel disappointed. However, it is important to alter your expectations of the child and learn how you can interact. The parents will be able to advise on the best way to do this.

Expectations also need to change in terms of giving the child a task. For example, telling the child to get dressed may not result in any action. Often, a complex task needs to be broken down to manageable chunks ie. arranging the clothes, take off old clothes, put shirt on etc. If you are quite involved in the child's life, the parents can advise on how these tasks are best managed.

If you are friends of the family and have kids, your kids may need to be informed about ways to interact with a child on the autism spectrum. This doesn't need to be explained as a disability, but more as a need for understanding if the child does not respond much, has trouble joining in play or is easily upset. The parents can best explain the things your child will need to know.

providing longer breaks for the parents

If you are a well-established part of the child's routine and know the intervention styles used by the parents, you may offer to look after the child overnight, for a weekend or even longer. This can be a massive support for exhausted parents who may not have access to professional respite services that are experienced with autistic kids. A substantial break like this can work miracles for parents who feel they are at the breaking point!

Click here to read a personal story about lack of understanding by extended family members.

See the Family and Carer issues section of the website for more information.

Click here for the full range of Asperger's and autism fact sheets at www.autism-help.org
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