This web page talks about a few of the issues that families can face after a child is diagnosed with autism (including Asperger syndrome).
After receiving the diagnosis we felt a bit better. It was a relief, because we could actually say he was autistic. It was a relief to be able to use the diagnosis.
Parent of a child with autism
An autism diagnosis can be difficult for a family 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 – not just the child with autism – to live together and feel supported.
Nonethelss, a diagnosis can be a positive step.
Getting some practical support
Getting an accurate diagnosis can give people with autism – and their families – access to specialist support and services. This is important for children with autism, who can benefit from appropriate, sometimes intensive, support from an early age. It’s also important for families, who may really benefit from services such as short breaks and support groups.
There is more information about autism on our website. Visit www.autism.org.uk/aboutasds
You can find out more about support and services in our booklet, After diagnosis. Download your free copy here.
Our Autism Helpline can also tell you more about the help available to you, and talk through any issues you're facing. Tel: 0808 800 4104 (open Monday-Friday, 10am-4pm). Calls are free from landlines and most mobiles.
Supporting your child
Try to remember that, despite the diagnosis, your son or daughter is the same person that they have always been. The only difference is that you now know what condition they have and you can begin to help them to maximise their potential and to live life to the fullest.
The Living with autism section of our website has lots of practical information on topics such as behaviour, communication, education, social skills, and ways to support your child at home and when out and about.
Supporting siblings
You may feel that your child with autism takes a lot of your time and attention - and it's possible that siblings feel this way, too. Make time for siblings when you can and listen to the things that are important to them. It may help to do some activities separately in the family, if you can.
Siblings may benefit from having time to themselves, for example occasional breaks like sleepovers at friends’ homes. They also need to be able to bring their own friends home and enjoy themselves without interruption, where possible.
Try to listen to siblings' worries and concerns - but also their ideas.
Older children may have good ideas about how best to manage certain situations. If they have a good relationship with their brother or sister, they may be able to ask them to do things that you can’t.
The future is sometimes a worry for siblings. At some point in the future (and if relevant), it may help to talk with them about who is expected to care for their brother or sister when they are older.
Looking after yourself
It will take time to adjust to your new situation and 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.
Remember to allow yourself 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.
Talking about your experiences
It may help to talk about your experiences with people who have been in a similar situation.
- Our Parent to Parent Service is a confidential telephone service, offered by trained volunteers who are parents of children with autism themselves. Tel: 0808 800 4106; leave a message and one of our volunteers will call back.
- Our online community is a safe and welcoming place to share your thoughts and experiences: visit www.autism.org.uk/community
- Local parent groups can be a great source of help and support. Find your local NAS branch at www.autism.org.uk/branches, or call our Helpline on 0808 800 4104 for details of other groups in your area.
Useful books for families
Ariel, C. N. and Naseef, R. A. (2005). Voices from the spectrum: parents, grandparents, siblings, people with autism and professionals share their wisdom. London: Jessica Kingsley Publishers. Available from www.autism.org.uk.amazonshop
Attwood,T. (1998). Asperger’s syndrome: a guide for parents and professionals. London: Jessica Kingsley Publishers. Available from www.autism.org.uk.amazonshop
Bleach, F. (2001). Everybody is different: a book for young people who have brothers or sisters with autism. London. The National Autistic Society. Available from www.autism.org.uk/pubs
Brock, C. (2010). I’m a teenager... get me out of here! London: The National Autistic Society. Available from www.autism.org.uk/pubs
Fairfoot, E. and Mayne, J. (2004). My special brother Rory. London: The National Autistic Society. Available from www.autism.org.uk/pubs
Gorrod, L. (1997). My brother is different. London: The National Autistic Society. Available from www.autism.org.uk/pubs
Hunter, T. H. (2006). My sister is different. London: The National Autistic Society. Available from www.autism.org.uk/pubs
Pike, R. (2008). Talking together about an autism diagnosis. London: The National Autistic Society. Available from www.autism.org.uk/pubs
Welton, J. (2003). Can I tell you about Asperger syndrome? A guide for family and friends. London: Jessica Kingsley Publishers. Available from www.autism.org.uk.amazonshop
Wing, L. (2003). The autistic spectrum: a guide for parents and professionals. London: Robinson. Available from www.autism.org.uk/amazonshop