UK – I was extremely lucky when my son was first diagnosed with autism, and to be honest, I was extremely lucky for the year and a half before be was diagnosed. The reason being that I was well supported by professionals and parents who understood what was going on in my life; they understood my situation. For many parents though, they do not have this support network, this wealth of knowledge handed to them. I did, mainly because I was in the right place at the right time. My son was already attending the local Children’s Centre and it was here that I found help. For many parents now though, and in the years to come, this help may no longer be available due to all of the local cuts that are taking place. Cuts to those services that have an impact upon the support given to children during their early years, but that is an entirely different discussion.
So what do you do if your child has just been diagnosed with autism? For many parents they are given a leaflet and then are left to get on with it. Firstly remember that help is out there. Contact your local Children’s Centre, contact your local National Autistic Society (NAS) branch, or phone their helpline to find out where their nearest branch is and to access information. Join local groups so as to be able to chat to other parents who are in similar situations. For example I accessed a local support group, AOK, a peer support group for parents and carers of children with additional needs at Lune Park Children’s Centre. I then also accessed the North Lancashire Directions Group which offers information and support to parent carers run by Lucy Ellis who is also a parent peer support worker at AOK.
Find books on the subject. The NAS website has an extensive list of well researched and recommended books as does the charity Cerebra, who offer a postal book lending library service, which is free to members. They also offer a sensory toy lending service which is also free. I wrote an article on this back in 2013, which can be read here. I also have to personally plug Aukids magazine, which is a positive parenting magazine for children on the spectrum. I have subscribed to this for many years and find it extremely helpful as well as being a fun read. You can read our article about them here. The Anna Kennedy Online also has a wealth of information and helpful resources for parents of autistic children.
When your child is diagnosed with autism, even if you are prepared, it still comes as a shock, it did for me. There are so many questions running through your head. I know I had lots of worries and concerns, and still do. I was worried about getting him the right support in nursery and then the right school, accessing early intervention, speech and language therapy, advice with diet and behavioural issues. I was worried about my own lack of knowledge when it came to looking after a child with autism. Then I was concerned how we, as a family would cope and what impact this would have on my other child. What on earth did I know? Well at the time, not very much, and I am still learning; I learn all the time. So my advice is to find those support services and networks that work best for you.
One piece of advice that I have though, is to not go trawling the internet, as tempting as that may seem. There is a lot of misinformation out there. The best port of call is the NAS.
I hope that this is of some help. Just remember that you are not alone.
NAS website www.autism.org.uk Helpline number 0808 800 4104