Living With Autism - Support Groups
When our son Sam was diagnosed with ASC we were devastated. 15 years ago Autism and it's related conditions were nowhere near as widely known about or publicised and we had absolutely no knowledge of what it's effects were or how it would impact on our lives.
Whilst medical professionals could answer general technical questions, none of them lived with it on a daily basis or really knew how it feels to be someone with the condition.
This is where the internet came to our rescue. Now I know you shouldn't always take at face value everything you read on the web and there are definitely mis-informed people that are less than useful and sometimes deeply upsetting to deal with BUT there are many resources available to parents and carers who don't know where to turn.
Blogs from parents, facebook groups, local support groups and other websites are available and they are all run by people who are in the same situation, some of which have been dealing with ASC for years either with their own children or through schools (both mainstream and 'special')
There are now even resources written by people who are on the spectrum and these give an amazing insight into what it means to be autistic - it also shows just how integrated into public life people with autism can be.
For example, Sam and I are passionate supporters of our local non-leage football team Aveley FC. One of the teams in our league has a super-fan who although he has autism he follows his club both home and away and travels to and from the matches by public transport all on his own. He also tweets about his exploits and also runs a vlog (video blog) via his own youtube channel.
He is an inspiration to autistic people everywhere and has also been known to do lectures on the best ways to use public transport.
Whilst online resources are fantastic, nothing beats meeting up with parents and carers (and their kids) to talk about each others situations, swap tips or just find a shoulder to cry on when everything is just getting too much. Attending a local support group also gets you out of the house and mixing with other people who know exactly what you are going through.
Our local group is the Thurrock branch of the National Autistic Society and it is run by people who all have children with autistic spectrum conditions. The do a marvellous job arranging coffee groups, group activities (for both kids and parents), outings and are always there on the facebook group for emergency advice.
I'm by nature quite a shy person who generally avoids groups of strangers or situations likely to bring on anxiety (my wife swears i'm an undiagnosed Aspergers case) but even I sometimes find it useful takling to other members of the group. My wife, who is a lot more confident, gets involved with most of the meetings and get-togethers and Sam loves the Video Gaming days, Swimming Club, Lego Club and other ad-hoc activities that are organised by the group.
The event was a great success and we are planning a repeat in the new year when the weather gets warmer again.
So, if there is a local support group available to you then what's stopping you getting involved. If there isn't one local enough then set one up yourself - they'll be loads of local people just looking for something similar and you can speak to someone from a not-so-local group to get advice and help with the setup.
Just remember, however dark and frustrating it gets, you are not the first (or last) person to go through the same journey - use the wealth of experience of people who have already been through it and never struggle alone.
Next time I'll talk a bit more about our journey since diagnosis and also some of the benefits of declaring your carer status when going on days out with the kids.
You can contact me with your feedback or your stories either via the blog, on twitter @kevin_cannon or by email torchwood1968@gmail.com
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