Parenting is a difficult job, but parenting a child with autism spectrum disorder (ASD), which includes autism, Asperger syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS), poses extra challenges.
See your doctor, ASD professional or local ASD association for information and advice. Remember that other parents of children with ASD can be a goldmine of tips and suggestions, so a good idea is to join a local support group where you can share experiences in a supportive environment.
After a diagnosis of ASD
A diagnosis can bring about many different feelings for parents and carers. Some may feel an initial period of panic or distress, and this is completely normal. Others experience a feeling of relief as they are able to put a name to their child’s issues. Many experience feelings of grief and loss for the future that they had anticipated, which now may not eventuate and some may feel a mixture of all these. All reactions are valid and normal.
During this time, you may like to consider:
- Counselling may help you to manage your own feelings about your child’s diagnosis.
- There are many different approaches to the management of ASD. You may like to research them yourself to find the best approach for your child and family. Good starting points include your doctor or paediatrician.
- Other parents who have children with ASD can be excellent sources of information. Contact an ASD support group for further information, support and guidance. Amaze (Autism Victoria) has a list of some ASD support groups in Victoria. Call 1300 308 699.
- When searching the internet for information on ASD management programs, be aware that not all information on the internet is reliable. Check with your doctor or ASD professionals, and be wary of any website that claims a ‘cure’ for ASD. It is a lifelong condition and while there are many therapies and strategies to help overcome impairments, there is no cure.
- The Raising Children Network’s Parent guide to therapies will help you find reliable information about a wide range of therapies and interventions for children with ASD. Each parent guide sets out what the research says about the therapy, and the approximate time and costs involved.
- TherapyConnect is a resource created by AMAZE to help families of young children with ASD understand the therapy process.
Choosing an ASD management program
- Seek advice from your doctor, ASD professionals and local ASD organisations. It may be worth collecting information on an intervention program you’re considering and discussing it with the medical or paramedical team (or both) involved in your child’s care.
- Only choose management programs that are based on sound, scientific principles (evidence-based practice).
- Be wary of the validity, value and risk of experimental programs. Consult with your doctor or ASD professionals for guidance before agreeing to anything that is not evidence-based.
- Make sure the people offering the program are properly qualified. Ask questions about staff qualifications, their participation in ongoing professional development and their experience in working with people with ASD.
- Find out about the time, effort and cost involved – for example, you may not have the time or resources to devote to an intensive program because of other children or work commitments.
- The program may be for children with particular abilities or who are a particular age, so check that it is appropriate for your child.
- Be wary of programs that claim to work for everyone with ASD – their approach may be too broad to be useful.
Around the home for children with ASD
Parents are used to childproofing their homes, but children with ASD are more at risk of wandering (or absconding, or eloping) than typically developing children. Families finding this to be an issue should consider extra precautions.
It is important to find a balance between keeping your child secure and making sure your home is still safe and easy to get out of in an emergency (like a fire). Talk to a locksmith and other parents who face similar issues.
- Some children with ASD are experts at escaping the most secure homes. If you need to, talk to a locksmith about installing lockable security doors on exterior doors and window locks – but make sure you can still get out quickly in an emergency.
- Use key-lock door knobs (or bolts or chains installed high on interior doors) if you need to keep your child in their room at night, or to block access to certain rooms.
- Fences and gates are a good idea for both your front and back yards. Some are more easily scaled or opened than others, so consider this when choosing or installing them.
- Window blind cords can be dangerous to children who put their head inside the loop. You can cut through the loop, shorten the cords, install a hook on which to wind the cord, or remove it all together.
- If you are concerned that your child might be at risk around glass, try using acrylic plastic in place of glass, use shatterproof glass or in extreme cases reinforce, protect or board up your windows. In some cases, you can install foam. Use picture frames with plastic instead of glass.
- Try to keep safety precautions low-profile so that you or other family members do not feel confined in your own home.
Personal hygiene for children with ASD
Sensory issues – either hyper- or hypo-sensitivity – are common in children with ASD and may affect one or more senses. For example, being touched may hurt a child who is over-sensitive, while it may feel like being tickled for someone who is under-sensitive.
Both situations can cause distress to the child. In many situations, sensations can be avoided, but in the case of essentials such as hygiene, it can create a number of problems.
Suggestions to help include:
- Contrary to popular belief, it's not necessary to bathe children daily unless there are special medical or sanitary reasons to do so. If your child resists bathing, aim for one or two baths per week – at other times, clean them as best you can with a warm damp cloth or sponge. A flexible shower hose can be very useful for washing the hair of children who are afraid of standing under a shower.
- The fear of water may be overcome by the novelty of swimming pools, showers, jumping over lawn sprinklers, or appealing bath toys and can be introduced gradually. There are ASD-specific swimming programs and instructors who can help with this process.
- Some children with ASD dislike getting their fingernails and toenails cut. You could try teaching the child to do it themselves (with nail clippers rather than scissors), but make sure that their age is considered and appropriate safety precautions are taken. Curved toenail clippers are larger and easier to operate than smaller fingernail clippers, and can do both jobs passably. Another option is to perform the task while the child is asleep.
- If your child is sensitive to getting their hair cut at the hairdressers, try hugging them in your lap. Regularly brushing your child’s hair or role-playing with your child the procedure of having a haircut may help to ‘desensitise’ them to getting their hair cut. Try reading them a Social StoryTM, which are stories used to help people with ASD develop better social understanding. Perhaps try cutting their hair yourself. If this is too difficult, cut their hair as best you can while they are asleep.
Clothes for children with ASD
Again, largely due to sensory issues, some children with ASD do not like wearing particular kinds of clothes or fabrics. To help manage this, you could:
- Ask your child why they want to take their clothes off. They may be able to tell you what’s irritating them.
- Your child may be overly sensitive to the feeling of clothes against skin. Consult with your occupational therapist for help to develop a ‘desensitisation’ program.
- Choose soft fabrics, preferably cotton.
- Avoid clothing with tight waistbands, collars or cuffs.
- Remove clothing tags that may rub against their skin.
- If a child frequently takes off their own clothes, you could try dressing them in clothes that are difficult to remove, such as overalls or jumpsuits.
- Choose shirts, dresses and pants that button at the back.
- Replace zippers, Velcro, buttons and other easily opened fasteners with more complicated options.
- If your child constantly removes their nappy, check that it’s comfortable. Try switching from cloth to disposable (or the other way around) or try a different brand.
- You may need to wash new clothes several times before your child starts wearing them. This will help to remove any unfamiliar smells, soften the fabric and reduce possible irritation.
- If you find an item that your child likes and is happy to wear, you might consider buying it in a few sizes so that you are ready for when they grow out of it.
Going out with children with ASD
One of the characteristics of ASD is a preference for consistency and routine, and a dislike of unexpected change. This can make outings very distressing for children with ASD, so it is a good idea to be prepared.
- Plan the outing or trip. Prepare your child before leaving home – for example, verbal reminders, visual cue cards or the use of a timetable outlining ‘today’s activities’.
- Try to have another adult with you to help out if needed.
- Choose ‘family-friendly restaurants’ or chain restaurants that don’t expect perfect behaviour from young patrons.
- Take books, pens and toys for your child to play with.
- When eating out or shopping, try to choose times when it will not be busy.
- Reinforce good behaviour with plenty of praise.
- Try to avoid delays. For example, book the first appointment if possible, when visiting the doctor or dentist so that your child doesn’t have to sit for too long in the waiting room.
- Remember to reward your child for good behaviour, such as praise, encouragement, tangible rewards.
- Alert cards may also be useful. These small cards are designed to tell other people about ASD and ask them to show respect and tolerance. They can be easily carried in a wallet or purse and handed out as appropriate. Alert cards are available from Amaze (Autism Victoria).
Where to get help
- Your doctor
- Amaze (Autism Victoria) Tel. (03) 9657 1600
- Statewide Autistic Services – Respite, Residential and Recreation Services Tel. (03) 9773 6044
- Aspergers Victoria Tel. (03) 9845 2766
Things to remember
- Parenting is a difficult job, but a child with ASD poses extra challenges for parents, siblings and the extended family.
- See your local GP, ASD professionals, local ASD associations or other parents at your support group for more information and advice.
This page has been produced in consultation with and approved by:
Autism Victoria trading as amaze
Content on this website is provided for education and information purposes only. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your doctor or other registered health professional. Content has been prepared for Victorian residents and wider Australian audiences, and was accurate at the time of publication. Readers should note that, over time, currency and completeness of the information may change. All users are urged to always seek advice from a registered health care professional for diagnosis and answers to their medical questions.