An introduction to autism for grandparents

This resource is for grandparents who have an autistic grandchild. Grandparents are faced with the dual concern—for their grandchild and for their own child and the challenges they face as a parent. How can grandparents best support their family?

"I am blessed with two grandchildren who love me and whom I love dearly. One with a head full of curls and who likes to play with dolls and puppies. Another who’d rather climb trees and has autism. It does not make my job harder, just more important!”
Elizabeth, Grandmother

Grandparents play an important role in the family unit. A grandparent’s role may include:

• Supporting the parents (your children)
• Providing child care/babysitting
• Teaching
• Researching information
• Historian (recalling family stories)
• Some grandparents also fill the role of a parent for their grandchildren

Every family has its own dynamics. Regardless of your situation there are a number of things you can do to help both your child and your grandchild.

This resource provides information and strategies to help you, your grandchild and your son or daughter in the role of parent.

What is Autism?

Grandparents have a unique and important role in the family unit.

Therefore, when a member of the family is diagnosed, it is essential grandparents have a good understanding of autism.

Autism is a pervasive developmental condition which is present from birth. Because the symptoms and severity of autism vary from person to person, it is called an “autism spectrum”.

Autistic people are likely to experience challenges with the following: social relationships, communication, sensory issues.

They may also have very deep special interests and be rigid in their adherence to routines. Autistic people may be unsure how to approach others or struggle to develop friendships with peers—or they may seem oblivious to other people a lot of time.

Autistic people may be unsure how to approach others or struggle to develop friendships with peers—or they may seem oblivious to other people a lot of time.

They may find it difficult to intuitively learn social skills and will require explicit instruction. While we don’t know exactly what causes autism, we know that it is NOT caused by particular parenting styles (e.g. ‘cold parenting’), by the actions of parents, or something the mother did while pregnant.

• 1 in 100 people are diagnosed with autism in Australia. Autism is a lifelong condition, children do not “grow out of it” and there is no cure.
• Early intervention therapy significantly benefits autistic children.
• Each individual is unique. Autistic people are quite different from each other. Some will live independent lives while others require considerable care. 

Your Grandchild...

• Is unique. Learn about them, not just about autism.
• Has their individual strengths and may do some things very well.
• Needs your love and respect.
• May have a limited vocabulary or extensive vocabulary but poor social communication.
• May use your hands or push your body towards something they want to show you what they need.
• May engage in repetitive activities/ behaviours.
• May strongly prefer particular foods.
• May have rituals or repetitive behaviours.
• May not respond to parenting techniques that work with other children. What may appear like ‘bad’ behaviour may actually be a reaction to feeling overwhelmed, stressed, or frustrated.

Give yourself and others time to work through this.

“As a grandparent I felt pain for my child as well as for my grandchild. 
I watch with admiration the life my son and daughter-in-law build around Daniel for Daniel.”
Frances, Grandmother

Denial can be a natural part of the grief process. If you have a difficult time dealing with the diagnosis, you may like to:

• Speak with your doctor
• Speak with trusted friends
• Speak to a counsellor

Supporting Your Grandchild’s Parents

The nature and amount of help that parents need and accept from grandparents varies considerably de-pending on the grandchild’s age and individual needs, family dynamics and other commitments.

Some grandparents want to help more but are afraid their grandchild’s parents may see this as ‘interfering’, or perhaps the grandparent is limited by geography or their own health considerations.

The best rule of thumb is to ask the parents what would be helpful. Openly discuss their ideas and expec- tations, and talk about any limitations you have on the support you can provide.

There are things you can do to support your child in their role as a parent.

Firstly, try to gain more knowledge about autism using this resource or visit www.amaze.org.au. Be understanding if your grandchild has a meltdown or shows ‘bad’ behaviour – un- derstand that it is a sign of your grandchild feeling overwhelmed at that moment and this is their way of communicating their stress/difficulty. Let the parents handle the situation. They may not use the discipline strategies you might expect and this is okay. The parents will appreciate your support. Try to avoid criti- cism. Get your child’s advice about handling ‘meltdowns’ and handling bad behaviour. Consistency is im- portant for your grandchild.

Offer to care for your grandchild in their home or yours. This may be for a couple of nights every few months, or regular nights each week, depending on what you can realistically manage given your circum- stances. This gives your grandchild’s parents time to spend with other children, sleep or have some much needed ‘down time’.

Siblings who do not have autism often feel neglected or that their autistic sibling gets more attention. Spending time with the grandchild’s brothers and sisters will help them feel important too.

For example, you might take your grandchild to school or pick them up.

Practical assistance such as mowing lawns, gardening or grocery shopping (within your limits and abili- ties) can also be helpful to your grandchild’s family.

"My grandson Daniel is a blessing. Daniel is bright, loveable, and irresistible. He charms everyone with his smile and big brown eyes. Daniel has autism.
My wish is that grandparents of all children with autism will discover the joy and beauty in their own Daniels!”
Frances, Grandmother 

Diagnosis

Authors talking about an autism diagnosis frequently discuss the various ways different parents may react

- shock, guilt, grief, or even relief. Parents may need time to understand and accept the diagnosis emo- tionally, while others are keen to read every resource available.

Grandparents too respond to a diagnosis in their own ways. In fact there may be a sense of ‘double grief’. Not only are they coming to terms with what the diagnosis means for their grandchild, but also what it means for their own son or daughter.

Your grandchild’s parents may have reactions that differ from your own – or you may respond in similar ways, depending on your personalities. It is important to respect both your reaction and theirs.

Bring out the Best in your Grandchild

Below are some practical ideas to support your grandchild and help bring out their best. Everyone on the autism spectrum is different.

Some strategies will work for your grandchild, some will not. One strategy may work some days, but not others.

It is helpful to have several strategies to adapt to the situation and the day. Your grandchild’s parents will also use a variety of strategies.

General Suggestions

• Learn about autism.
• Include your grandchild – your grandchild may have difficulty communicating effectively but still needs to be included.
• Encourage independence – avoid learned helplessness. The more independent your grandchild can be (within reasonable expectations of age and ability), the more your grandchild will thrive as they become older.
• Be positive – children tend to do best in a positive environment with support. Do not focus on autism, focus on him/her as a child.
• Do not focus on autism, focus on him/her as a child.
• Let your grandchild teach you.
• Let your grandchild know when they do something well. Share successes.
• Prepare your grandchild for any change in advance.
• Keep your sense of humour.

Communication Strategies

Autistic people often need longer to process information. After you speak, allow 10 full seconds for your grandchild to process the information and respond.

Visual Cues: it is important to support communication with visual cues – e.g. when asking the child to put on shoes, hold up the shoes as a visual cue. Again, give the child extra time to process what you are communicating.

Make instructions brief and concrete: “ I’d like you to put your book down now so I can tell you about what’s happening after lunch” is a complex sentence and hard to understand.

“Book down, listen” is more effective. If your grandchild uses pictures or symbols to communi- cate, keep a set for use in your home/car.

Sign language: if your grandchild uses sign language learn their most frequently used signs (or all of the signs, if the child spends a lot of time with you).

Offering choices: when offering choices, limit the number of options to two. This will help avoid confusion and feeling overwhelmed by the decision.

For example, if you are in an ice-cream shop with 48 flavours “Which flavour ice cream do you want?” will be too much for your grandchild. Instead try “banana or chocolate ice cream?” You could further support this by pointing at the flavours as you name them.

Be specific with your praise: “ Well done. You packed up your game straight away” is better than “You were good.”

““Children with autism take things very literally and misunderstandings often result. Many grandparents (and parents) become frustrated over misunderstandings such as: “Grandparent: Can you put the dishes away? “Grandchild interprets as: “Are you capable of putting the dishes away?” and answers “Yes”. Grandparents think the child will put the dishes away and the child thinks they have answered the question. “To avoid confusion, family members may find it easier to rephrase questions as direct instructions like “Put the dishes away please”. Judith, Melbourne, Victoria 

“To avoid confusion, family members may find it easier to rephrase questions as direct instructions like “Put the dishes away please”.
Judith, Melbourne, Victoria
 

Connecting with your Grandchild

• Show love and affection as you do with any/ all other grandchildren
• Focus on your grandchild, not the autism
• Just like any child, your grandchild needs to have fun! Find out what your grandchild likes – e.g. puz- zles, cars, Barbie movies – and use these activities to spend quality leisure time together.
• If your grandchild wants to play alongside you (rather than engaging directly with you), that’s okay.
• Your grandchild may struggle with body language, facial expressions, tones of voice, jokes, satire and emotional situations – you may need to explain these in detail.
• Don’t insist on eye contact. Direct eye contact may be uncomfortable.
• Your grandchild may need your assistance socialising with cousins, neighbours and other children.

Behaviour

Maintain a normal speaking voice when your grandchild is yelling – your shouting will escalate the situa- tion (even though they are shouting!) especially if the child is sensitive to loud noises.

Most autistic children (and adults) develop their own coping strategies such as hand flapping, finger licking or rocking. Watch for your grandchild’s coping strategies and do not try to stifle these - they help your grandchild cope with stressful situations

In Your Home

Create a quiet, safe retreat where your grandchild can go when overwhelmed. If your grandchild is with you after school, ensure they have a retreat to unwind in. Let them watch TV, spend time in their room or quiet place, or do anything they find calming/relaxing.

You could create a visual calendar of planned events you will do with them and put it on the fridge. Mark off events as you do them. This helps create a sense of security around what is going to happen. Ensure they have a favourite toy or “security item” if they have one (especially younger children). This might be a cuddly toy or blanket.

roblematic for some autistic children. If you have fluorescent lights and aren’t our grandchild, simply turn of the lights and see whether your grandchild’s be- ur grandchild about the lights (if they are verbal). If fluorescent light bothers, try incandescent lights or experiment with other lighting.

Fluorescent lighting can be problematic for some autistic children. If you have fluorescent lights and aren’t sure whether it is affecting your grandchild, simply turn of the lights and see whether your grandchild’s behaviour changes - or ask your grandchild about the lights (if they are verbal). If fluorescent light bothers your grandchild, replace with incandescent lights or experiment with other lighting. 

Sleep can be an issue for many autistic people. Avoid giving your grandchild anything caffeinated before bed. Before you have a sleepover with your grandchild, speak with your grandchild’s parents about how they manage sleep and sleep routines.

Maintaining routines will help the child relax to sleep. 

Family Events

• Plan a break in the event for your grandchild.
• Explain any change of routine/event.
• Give your grandchild a special job to do.
• Label your grandchild’s pencils, toy box or other items that stay at your house.
• Ensure there is food present that your grandchild will eat.

For a deeper understanding, this information sheet can be read with the Amaze Information Booklet. The pack is an excellent source of information for families and is available at www.amaze.org.au/resources

Alternatively, you can request an Information Booklet from the Amaze Autism Advisors on 1300 308 699 (within Australia).

Resources

Amaze InfoLine 1300 308 699
Carers Victoria 1800 242 636
Council on Ageing Victoria (03) 9654 4443
Grandparents Victoria (03) 9372 2422
Victorian Aboriginal Child Care Agency (03) 9287 8800

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Source:

Grandparents' introduction to Autism - Amaze