If you have someone close with an autistic child and don’t know how to help them, this section might give you some ideas. (I apologise now for using ‘her’ and mean no offence to ‘him’s!)
I know that my friends and family worried about offering help – would they offend me? Would they say something insensitive and upset me? Sometimes when they asked what they could do to help, I was so tired I couldn’t even think what to suggest – or I worried that they were only offering because they felt they should, or that I would be a burden to their already busy lives. Sometimes I was in a bad place and took offence to their advice if I wasnt ready to hear it. I'm grateful that they kept on trying even though it was difficult. It’s a minefield! These are some ideas and suggestions for what you might do for your friends/loved ones if they are dealing with the possibility of autism in their family, or around the time of diagnosis.
In the early days while nothing is certain - it's probably best to concentrate on reassuring your friend that there is nothing wrong with her parenting. Tell her to trust her instincts - if she feels there is something not right, she should look into it. No one knows her son/daughter better than she does. A discussion along these lines could help, but use your own words – “I want to support you, in fact I need to support you - do you have any ideas of what help would make a difference to you right now?” It’s important you stress that it would make you feel good if you could be more useful – take the pressure off your friend so she can open up with what she really needs. Then listen, make notes if necessary – you might not be able to provide the help that is needed – but you could find it on your friends behalf. Say that you will get on with doing things you think are helpful but that your friend should speak up if you get it wrong – you won’t be offended.
Be creative. Sometimes the help will be practical – like helping her catch up on sleep during the day, or picking up shopping, sometimes emotional – helping her remember who she is in all this, arranging a babysitter so you can take her ‘out’ - or babysitting so her partner can take her out. Material support – almost always your friend won’t be able to get adequate childcare and will end up having to give up or reduce work for a time, and therefore income suffers – at a time when costs are likely to increase. She may need your help to access available monetary support like the Disabled Living Allowance or fundraising. Research – you may be able to spend time reading or on the internet to find answers for your friend – meaning she can spend more time with her child, or sleeping. The very best thing anyone could get for me is a cleaner for a day to blitz my house from top to bottom (having said that, I hate cleaning – someone very houseproud might not like that?!) – Also, gardening – I find it really difficult to keep up with the gardening due to the level of attention my son needs – tell your friend you fancy a bit of physical work and would she mind if you ‘hoik’ out some weeds, sweep up some leaves or mow the lawn.
If your friend doesn’t know what support would be useful – proceed as if they are the mum of newborn twins – anything you would do in those circumstances is likely to be useful. When you are visiting – call first and say you are dropping into the supermarket on the way – do they want you to pick anything up? When you cook a lasagne or a cottage pie or similar, make an extra portion and pop it in her freezer. - or pick up a lovely lunch on the way. When you arrive, don’t expect to be waited on, make the tea, get the biscuits out – and while you’re at it, rinse a few dishes and wipe over the sideboard. Most people wont take offence to these things. Parents of autistic children are highly likely to be suffering from long term sleep deprivation (the longest my husband and I slept in three years was around five hours!), so again – if your friend reacts badly to any of your efforts, don’t take it personally. Ask if there is anything you CAN do to help.
When your friend talks, concentrate on listening. Try not to offer opinions or advice – I can tell you this for certain – your friend will have tried everything she can think of already! If you are asked for an opinion and you don’t know what to say – be honest, say you don’t know what to say – but also ask her along these lines ‘if I was to say the magic words you want to hear right now, what would they be?’ – 9 times out of 10 we are able to answer our own questions – we’re just not sure we like the answers!
Resist the urge to suggest any parenting tips from supernanny – ‘time out’ for my son was a reward – he didn’t want to be with us anyway! He didn’t understand the rules and didn’t have the same urge to please – so none of the traditional parenting techniques worked with him. Luckily I already had my daughter, so knew I was capable of being a parent – however, I still felt that I was doing something ‘wrong’ or ‘failing’. Tell your friend all the things about her that are wonderful – tell her she is doing the best she can and that what she is doing is good enough by a long shot – look her in the eye and tell her what a great parent she is – she needs to hear it.
Things to keep an eye out for: It’s worth reading up about depression and anxiety on the internet and becoming familiar with the signs. If you think your friend is becoming more than tired and stressed you may need to gently look for opportunities to suggest she chat over how she is feeling with the Doctor – it’s true she might bite your head off - It’s stressful to take a risk – but if you don’t, who will? The mark of a true friendship is not that you never disagree or fall out – it’s how well you get over the bumps in the road that counts!
Some other things that will help:
Just be there. Always try and listen. Your friend may need to talk 'at' you and download - resist the urge to try and fix or give a solution - this is the absolute best support you can give someone - just to be there, completely accepting of everything she says and loving her and her child unconditionally.
Learn what you can about autism, if you see a good article, cut it out - a programme, tape it - tell your friend a bit about it and ask if she wants to see/read it.
Accept the changes to your relationship. Your friend may now need you more than ever, but be embarassed because she is unable to repay your kindness. You may be initiating lots of help, or doing all the travelling - it may be that you telephone and your friend is off the phone within 5 minutes because she has to watch her child and keep them safe. Dont think it is a reflection on the value she has of your relationship, try and find out the best way to spend time with her.
If you like being around children, volunteer to learn some play techniques and work one-to-one with your friends child a few hours a week.
I spend HOURS preparing for structured play sessions, taking photos for visual schedules, laminating, cutting out, sticking velcro and generally trying to be inspired. A few hours of your energy helping with lesson preparation would save more than a few hours of your friends time, or browsing in education sections of bookshops and libraries for ideas. If you are gifted at lesson preparation, buy some large zip-loc bags and put together 'play sessions' in a bag with a list of instructions and the items needed - wow!
Bring your child over to play. It can be very difficult managing play between autistic children and their peers, but please keep trying. Later on as the children develop and become more social, your older children will really benefit from the experience of helping your friends autistic child with their social skills. There are lots of books that help children understand autism better, and though it can be really tricky to work out the 'rules' in the early days, it will be beneficial to everyone.
Help her keep her focus. If I had taken up arms against every injustice or thing that went badly, wrongly or was generally poorly dealt with regarding Archie, his health, care and education, I would never have spent a single second with him, his sister or my husband. My friends remind me - does this help him today? Will it help him tommorrow? Is this a good use of your energy right now? Can we do this later? What's the worst scenario if this doesnt happen? In doing so, they keep me focussed on the important things - your friend only has a certain amount of energy each day - help her be aware of how she uses it.
Remind her that she MUST look after herself - she is unlikely to want to prioritise herself in this situation but must be reminded gently, if she falls ill, what then? Maybe take it into your own hands, pick her up for a yoga session once a week?
I’d love to hear other suggestions to add here – use the contact us page to let us know!
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