Post autism diagnosis support
Autism is a lifelong disorder that has a great impact on the child or young person and their family or carers. There may be a sense of relief that others agree with their observations and concerns about their child. Diagnosis and the assessment of needs can offer an understanding of why a child or young person is different from their peers and can allow access to support and services in education, health services and social care, and a route into voluntary organisations and contact with other children and families with similar experiences. All of these can improve the lives of the child or young person and their family.
Despite these advantages, an autism diagnosis can be difficult to come to terms with. When autism is diagnosed, families and carers and the child or young person themselves can experience a variety of emotions including shock and concern about the implications for the future. It may be a condition the parent knows very little about, and the need is to try to find new ways for everyone to live together and feel supported.
Tips for parents following an autism diagnosis
Your child is the same person they have always been. Remember that your child is an individual, his or her own unique person. Beyond this they are a child with strengths and difficulties, being a child with ASD is one just part of them. Receiving a diagnosis does not change the child you know and love. Having a clear diagnosis allows you to better understand their needs, arrange the right support and help them to maximise their potential. Support and intervention can reduce the disorder’s effects and help your child thrive in life.
Help at school is based on need, in addition to the diagnosis. You can speak to the school about how your child might be able to get extra help before or after a diagnosis.
If your child has a high level of need that requires additional support beyond what you can provide yourself, then local authorities have a duty to provide services for children in need. Local social services (in England and Wales), Social Work Department (in Scotland) or Health and Social Care Trust (in Northern Ireland) can be asked to assess your child’s needs. You can also ask for an assessment of your needs as a carer. You might be able to access a variety of support such as short breaks.
Your family may be eligible for benefits such as Disability Living Allowance and Carers Allowance.
There are a number of programmes and on-line courses that can help you to understand autism and the related behaviour and build your confidence to encourage interaction and communication. These include –
–EarlyBird (different programmes depending on the age of the child).
Joining a support group to discuss your experiences with those in similar situations can be beneficial. Both children and parents can find it helpful to meet other autistic children and parents and to learn that they are not alone. The National Autism Society lists social groups, after-school clubs and support groups around the UK. Local groups may also run one-day family support seminars on topics such as understanding behaviour and sensory differences.
Parent to Parent is a confidential telephone service providing emotional support to parents and carers of autistic adults or children. The service is provided by trained parent volunteers who are all parents of an autistic adult or child. Telephone: 0808 800 4106 autism.org.uk
Support for siblings
Siblings might feel resentful and left out because the sibling with autism takes a lot of your time and attention. When possible:
- help siblings to better understand their brother or sister and their needs
- make time for siblings
- do some activities separately
- allow siblings to have time to themselves, e.g. a sleepover at a friend’s home
- allow siblings to bring their own friends home sometimes and enjoy themselves without interruption
- listen to their worries and concerns and the things that are important to them
- listen to their ideas – older children may have good ideas about how best to manage certain situations. If they have a good relationship with their autistic brother or sister, they may be able to ask them to do things that you can’t.
It takes time to learn how to help your child and family cope with day-to-day life and it is normal to feel annoyed or frustrated. Try to get some time on your own to relax, even if it is just to walk the dog or have a bath. Try not to feel guilty about doing this. Everyone deserves some time out to practise self-care to give them more strength in their ability to be able to support others.
Your Employee Wellbeing has a team of experts who help support employees with the challenges they face in every day life. Our childhood resource associate, Karen Beresford, wrote this article.
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