What can I do to cope better with my child’s diagnosis?
Prepare and research
Nothing can prepare you for the diagnosis of autism however there are things you can do to make it easier. Research, talking to others and joining support groups can help for the times ahead.
Knowing what to expect and sharing your experience with others can help lighten the load. Preparation is also essential for day to day living with a child with autism so you can stay one step ahead of the surprises that life can throw at you. Do some research and reading. There are literally thousands of books and websites about autism. See our links and recommended reading page for some starters.
When researching autism on the internet be very wary of anyone claiming to cure autism, claiming to know the definitive causes of autism or offering expensive treatments. There is no cure (at this stage) for autism and no definitively researched and defined causes. Discuss any treatments or therapies with a doctor or other health professional prior to embarking on them or spending a lot of money. Treatment, interventions and supports need to be tailored for each individual, child and family.
Finding your way through the maze of services and support, information and figuring out what help and support your family actually needs can be a confusing problem for families of children with autism.
Start by contacting your local Autism service provider- .i.e. Gateways, Autism Victoria or Disability Intake at the Department of Human Services. These agencies are designed to provide support and information and to set you on your way to finding the help you need.
Strengthening your relationship
Having a child with autism can be a great stressor on a relationship. Parents have a great deal of stress, grief and other conflicting emotions to deal with. Autism can be physically exhausting, socially isolating and financially draining.
Support is the key. Without supports such as respite and counselling and participation in support groups the health of individuals in the family can suffer. Sibling supports for other children in the family are also vital.
Mothers are vulnerable to social isolation, poverty, depression, and emotional distress. They may experience social exclusion and negative attitudes from the community. Mothers of children with disabilities have the same aspirations for their child as all mothers, but may feel a sense of grief and loss for their child may be fearful for the future and may experience depression and anxiety. It is important for mothers to seek support and not be socially isolated. It does get better with time and each stage of the child’s life is different and brings different challenges.
Fathers deal with diagnosis differently to mothers and may be less reluctant to seek help and support. They may feel shame, blame, helplessness and disappointment. Fathers often want to fix things or do practical hands on things for their child, but may not know how. It is important to the health of the relationship and the health of the family that fathers seek help and support at diagnosis and at other times. Relationships within the family of a child with autism are under immense strain and often break down so it is important for fathers to work through their feelings and issues.
Grandparents are important in the life of a child with autism. They can be a great source of support and guidance to the child and their parents.
Grandparents can feel saddened, lost and disappointed at the diagnosis of the child with autism. They may not understand disability and may be from an era where children with disabilities were treated very differently. Counselling, information and support for grandparents is essential to ensure they have a harmonious, productive and loving relationship with their grandchild and can understand and support their needs.
Some specialist grandparent support groups are available. Contact Gateways Support Services, your local autism provider or Autism Victoria.
Other family members may also want to be involved but not best know how to support their niece, nephew or family member. Provide them with the information they need and communicate with them the best way to help you. Negativity towards disability can be an issue in some families, correct information and breaking through myths is important to ensure a cohesive, supportive extended family.
Siblings – for information regarding siblings of children with autism please see Siblings
When a child with autism is visiting the non custodial parent the change of routine and environment can be a cause of great distress for the child and great concern to the custodial parent.
To minimise the stress of access visits some preparation and cooperation is required.
• Try and ensure a similar routine is kept wherever possible; a schedule may need to be provided for the other parent.
• Ensure the child has familiar and important objects or toys with them that help lessen anxiety and keep them calm in an unfamiliar environment.
• Ensure safety measures are in place- locked doors, fences where appropriate, chemicals, matches etc locked away and any other potential dangerous items out of sight.
• Medication- it is critical that if the child is taking medication it cannot be missed. A chemist can easily and cheaply put together a Webster pack for medication which sets out each individual dose with day and time. The medication schedule should be provided to the non-custodial parent and be clearly understood.
• No matter what the remaining relationship status of the parents is, the safety and well being of the child is paramount.
• Communicate and discuss any problems that may arise, and make sure both parties are on the same page when it becomes to dealing with behaviour- a consistent approach is important.
• Caring for a person with ASD can has a significant impact on the mental health of parents/carers.
• Serious depression, anxiety, stress and or other health concerns can arise.
• It is important to seek help for these issues to avoid further health complications and burnout.
• A GP can draw up a metal health care plan which can provide 6 free visits to a psychologist.
• Relaxation and meditation, yoga, pilates or other spiritual pursuits can help keep your mental health balanced and provide some much needed downtime
• Take time out do something you enjoy- a hobby or interest, a fitness class, a walk, or a cuppa with a friend.
• Keeping active – even if it is just a 30 minute walk each day- is vital to your mental physical and emotional health. Just getting out of the house for some fresh air can help you feel better and help clear your head.
• Eat well – good nutrition is important to your health and coping mechanisms,
• Reduce alcohol and cigarette intake as they can both exacerbate stress, depression and anxiety problems and disturb sleep.
• Sleep- it can be very difficult to get undisturbed sleep when you have a child with autism. Seek help for your child’s sleeping problems if necessary, as lack of sleep can contribute to stress, depression and carer burnout.
Social health and well being
• Having a child with autism can be a socially isolating experience.
• You may feel you can’t go anywhere together as a family, and or no one understands. You may miss many social and important occasions and just miss out on simple things like being able to visit the shops without a major exercise in planning.
• All of these factors can isolate families and individuals, resulting in depression and stress. Building a social network is very important.
• Catching up with a few close friends, attending a support group or even chatting to others whose child has autism on line can be very useful to break the pattern of social isolation and keep your health in check.
Celebrate the achievements no matter how small
It may sound obvious but celebrate any and all achievements as you go along. Raising a child with autism is an exhausting but incredibly rewarding experience. Celebrating milestones and achievements can give you something to look back on those days that are toughest.
•Using respite, counselling, home care and support group services is not a sign of weakness.
•Respite, counselling and support are the tools that can keep families strong and build resilience to go on.
•Without a break you are not at your best to deal with day to day challenges that can wear you down.
•Taking a break as a couple is also vital to ensure the long term success of the relationship.
•For further information on taking a break see RESPITE