Post-diagnosis support - a guide for parents and carers
An autism diagnosis can be difficult to come to terms with. You may be coping with a condition you know very little about, and trying to find new ways for everyone to live together and feel supported.
Moving on from a diagnosis can seem daunting, but we’re here to help. This guide explores support available after your child’s diagnosis.
Support for your child
Your child is the same person they have always been. Now that you know they are autistic, you can begin to better understand their needs, arrange the right support and help them to maximise their potential.
This is important for autistic children, who can benefit from appropriate, sometimes intensive, support from an early age. It’s also important for families, who may benefit from services such as short breaks.
A diagnosis can help your child to get autism-specific support, but this doesn’t happen automatically.
At school
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.
Social care
Local authorities have a duty to provide services for children in need. Your child does not have to be diagnosed to be considered in need.
You should contact your local social services (in England and Wales), social work department (in Scotland) or Health and Social Care Trust (in Northern Ireland) to ask for an assessment of 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.
The person who diagnosed your child might have told you that they would contact these services for you. But it can take some time for them to do this. You may wish to contact your education and social services department yourself anyway. They will contact the diagnostician for information if they feel it is needed.
Financial help
Your family may be eligible for benefits such as Disability Living Allowance and Carers Allowance.
At home
The diagnosis itself, and the profile of needs if the diagnostician gave this, may help you to better understand your child and their needs.
EarlyBird post-diagnostic support programmes for parents and carers can help you to understand autism, build your confidence to encourage interaction and communication, and understand behaviour.
We also run one-day family support seminars on topics such as understanding behaviour and sensory differences.
Support for siblings
Siblings might feel that your autistic child takes a lot of your time and attention. When possible:
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help siblings to better understand their brother or sister and their needs
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make time for siblings
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do some activities separately
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allow siblings to have time to themselves, eg a sleepover at a friend’s home
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allow siblings to bring their own friends home sometimes and enjoy themselves without interruption
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listen to their worries and concerns and the things that are important to them
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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.
Find more information for siblings, and how to tell them about the diagnosis.
What if my child wants to meet other autistic children?
Some children find it helpful to meet other autistic children and to learn that they are not alone. Our Autism Services Directory lists social groups, after-school clubs and support groups around the UK.
Looking after yourself
It will take time to learn how to help your child and family cope with day-to-day life. You have the right to feel annoyed or frustrated. It’s hard to remain positive when things don’t go as planned and it is natural to feel upset.
Try to get some time on your own to relax, even if it is just to walk the dog or do the washing up, and try not to feel guilty about doing this. Everyone deserves some time out to recharge the batteries.
You can also ask for an assessment of your needs as a carer, so that you can access support such as short breaks.
It may help to talk about your experiences with people who have been in a similar situation, such as through our online community, or one of our branches.
Next steps
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Read our guidance on telling your child about their diagnosis
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Our online community, a place to share your thoughts and experiences
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Our Autism Services Directory for local parent groups and our local branches.