Those of us with a few years on this journey will often be asked for all sorts of hints, tips and advice and every one of us will offer a different view, this must be extremely frustrating for you newbies to the world of autism! The thing with the spectrum is that it IS a spectrum and every child on it has their own unique difficulties and strengths, no two autism families will have had the same experiences, when you then add in the cultural and geographical differences in therapies, specialists etc its a wonder ANYONE can make sense of the help (or lack of it) available. I am now several years post diagnosis and, through trial and (a lot of) error I’ve found the best people to turn to are other autism families, professionals may have the latest theories, the most expensive resources and an air of “trust me, I know best” but they don’t live this life, they get to go home after a day at work and close the door on autism, we don’t.
So, what advice would I offer to a parent with a newly diagnosed autistic child?
1. TRUST YOUR INSTINCTS – nobody knows your child like you do. Experts, family, friends and other ASD families will all have an opinion but you are the only one who lives with this 24/7, only you know what may or may not work with your child. Listen to everyone, research as much as you like BUT if you ‘go with your gut’ you won’t go far wrong.
2. ACCEPT HELP – I am probably the worst person in the world to take advice from on this as I’m ALWAYS turning down the help offered by friends and family as I don’t want to burden them or I don’t think they’ll be able to cope (I know how much of a handful The Whirlwind can be). I am, however, slowly realising that I NEED help, I can’t carry on 24/7 anymore and for my own sake as well as The Whirlwind’s I need to be able to recharge my batteries. There is a reason why airlines always tell you that in an emergency you should put your own oxygen mask on first – what good are you to your child if you are incapacitated – YOU MUST TAKE CARE OF YOURSELF so you can take care of your child.
3. STOP SWEATING THE SMALL STUFF – ok, so you haven’t managed to dust or vacuum in over a week, the laundry is mountainous and you’re seriously contemplating replacing all crockery and utensils with disposable ones but ask yourself, is your child happy, clean and at least half dressed? Even though its dusty is the house clean ‘enough’? You can’t do everything and unless you can afford a cleaner every day (even if your child could get over the fact there’s a stranger in the house!) you can forget about having a completely spotless house. Decide what YOU can live with and tell visitors that they can like it or lump it, if they’re that bothered they can always roll up their sleeves and get stuck into it themselves (see 2.)
4. JOIN SUPPORT GROUPS – whether online or in your local area you will get to meet other families who will just ‘get’ your life, they will accept you as you are, they will celebrate and sympathise with you in equal measure, they will become ‘family’ and you will wonder how you could ever have NOT had them in your life, even though you may never meet in ‘real life’
5. KEEP A SENSE OF SELF – It is NOT selfish to have a little bit of ‘me time’, when your child is at school, at a friend or relative’s, out with a carer, sometimes you need to say “sod all the jobs that need doing, they’ll still be there tomorrow”. Have some of that time for YOU, take a nap, watch a film, meet a friend for lunch or indulge in a hobby. Yes you are an Autism Parent but that isn’t all you are, do not lose yourself in your child’s diagnosis. This one is probably the hardest to achieve as autism seems to invade every part of your life, I know how easy it is to let it take over and become the ONLY thing in your life but even if you can only manage an hour a week, try and make that hour a time when you don’t think about, talk about or research autism at all.