Most people in your family circle and friendship groups will be wonderful, open to seeing things from your child's perspective and want to help you in any way that they can.
But sadly there will always be someone that just doesn't 'get it'.
No matter how hard you try they just see your child as naughty or that you should be tougher on them. That your child will grow out of it, or they could do a better job than you if "you just give him to me for the day and I'll soon sort him out". Ever heard that one?
I have to be honest and say that as hard as it is to be on the receiving end of this, so often it does comes from a place of love. I know, I know it doesn't make what they say and do any easier to take, but it could just be that they simply just don't understand.
Or sometimes the driving factor could be that they feel helpless and out of their depth with it all, and not knowing what to do can be pretty daunting. Especially for grandparents that could feel they may have missed out on a relationship with their grandchild if they don't like giving hugs, or going to nannies for tea. And then if you add into the mix the fact that they just don't really know what autism means, well you can see how family tension can rise and friendships can simply drift apart.
"He talks, he laughs he looks you in the eye, how can he be autistic I don't understand"
How many of you have ever come across this from someone in your family or from a friend? That's what Joe's Grandad says in the 'A word,' a series that is currently showing here in the UK.
And despite its flaws I think a programme like this on mainstream TV can only be a good thing really. If it gets families talking, gets aunts and uncles, cousins and grandparents thinking about autism and the impact that it has on family life, then I think that has to be a positive step in the right direction.
But for those that don't make the effort to understand, well I have learned over the years that if people can’t take the time to get to know my son, then it’s not worth me stressing over... it’s truly their loss not mine!
Because he has so much to offer.
Yes living with autism can be tough, but that's not my sons fault. Autism puts incredible strains on families but usually because parents like us have to fight for services, and deal with a world that sees autism as a burden.
And sadly I have drifted apart from so many of my close friends over the years because I couldn't go out like them. I was either tied to being in by a certain time, not able to get a sitter, or I had no money. Not to mention the battle with depression I have had (which can be a bit of a party pooper at times I have to say).
And so much of my focus has been on fighting for services for my son over these last few years that its easy to forget how important it is to have fun occasionally. And those friends that have stuck by me through thick and thin are so precious to me. What makes them all unique is that they accept me unconditionally despite all the baggage I come with. They have taken the time to understand what it means to have a child with autism, and we work around the limitations and challenges of my life with no judgement or pressure at all. When you find people like that it can make even the darker days a little brighter.
So what can we do to help our family and friends understand our child better? Here are some things I have learned along the way..
Tell them information on a need to know basis, too much information all at once could overload the
Point them in the direction of some organisations that can help
Remind them that you want them to accept your child for who he is, no ‘cures’ or ‘treatments’ they need to learn to accept your child for all that they are, autism included
Talk about the spectrum, using a visual comparison like a rainbow can help them understand this concept
You will probably need to talk about eye contact and how your child feels about hugs as some family members could think our child is simply being rude if they don’t want to kiss the goodbye
Let them know how they can help you. It may not be possible for them to take your child with autism out and about, but they could help by taking your other children out for the day to give them some respite
Tell them no question is too silly, they may have a burning question they want to ask but may be worried about offending you
They may feel you treat your child differently or let them get away with things that your other kids can’t do. Explain to them why this is. How many of your child challenges are hidden, and how you have to be flexible with your parenting. Your child’s needs are unique and this has to reflect in your parenting, so they need not to interfere and support your decision
Explaining behaviour in terms of panic attacks can sometimes help people understand what is making your child upset or causing what they may view as 'unacceptable behaviour' such as swearing, meltdowns and refusal. If they can try and understand what is causing your child's distress it may help them see beyond the behaviour that they don't understand, and be less likely to criticise or pass comment.
Be honest. There have been times when I have been too stubborn to ask for help, or admit that I wasn't feeling right myself. I have tried to be superwoman and prove that I can cope. Most people want to help if you just let them in. It doesn't mean I'm weak or a bad parent. It just means I am human
And finally for those that don't want to learn to 'get it,' just walk away. Let them go and move on knowing that your probably better off without them anyway . Remember they're the ones missing out. And you have too many other things to be worrying I am sure. Pick and choose your battles and listen to Queen Elsa when she belts out......
"Let it go, let it go"
(A-Z of Autism Acceptance Month April 2016)