AGXStarseed
Well-Known Member
(Not written by me)
Things you SHOULD say:
1. I don’t understand autism, can you tell me more?
Most of us knew very little about autism before we had kids, so you’re not alone! We’re happy to fill you in, just remember that our view is about autism as it affects our family and our views are likely to be different to the next person you speak to.
ASD-related issues affect people in different ways, so never be afraid to ask.
2. Are you okay?
The most obvious, and the easiest for both parties. Sometimes all we need is a friendly smile and a casual enquiry – even if the answer is a resounding ’No!’, it’s nice to know that people care. I usually go with a tilt of the head and knowing eye roll – accompanied with a mouthed ‘you okay?’ it can be enough just to let that parent know they are not alone.
Most people are well practised in dealing with their autistic child’s public meltdowns – nothing teaches tolerance than having to stand quietly by whilst your offspring screams incoherently at the top of their voice in the middle of a shoe shop. I learnt long ago that it’s usually easier to let my son yell a bit then shepherd him out of the store with the first pair of trainers I could find, crossing everything that they actually fit. But I have on occasion been very grateful for a stranger picking up my bags and helping me wedge them over my shoulders so that I didn’t have to let go of the screaming banshee in my other hand.
3. Can I help right now? Would you like this very large glass of gin/cup of coffee/shoulder to cry on?
As in, ‘can I do the shopping/run to the post office for you/go get you a newspaper’ – when we spend an awful lot of our time on high alert and/or filling in the endless paperwork that seems to come with ASD diagnoses (not to mention the appointments), parents of ASD kids almost always drop themselves to the bottom of the priority list.
You don’t even have to speak in order to help us – just do something that shows you care and/or empathise. We’re not expecting you to have any answers – hell, no one appears to have the answers, not even the endless specialists that end up involved in our daily lives have the answers – but a friendly ear and a cuppa can work wonders after a day of trying to figure out why our kid is utterly hysterical when all we did was put their chicken nuggets on the opposite side of the plate to usual (we didn’t even know there was a right side of the plate until now).
4. How are you?
So simple, yet it makes such a difference. Just knowing that others are thinking of you can sometimes be all you need to get through the day. But you have to mean it – there is a fair chance that we will tell you exactly how we are in great detail, along with flailing hand gestures and incoherent wailing noises. Do not panic! Keep passing the tissues and the chocolate and we will eventually wind down like a clockwork toy.
5. How are you/what are you up to? (directed at your child)
As with all people, some autistic kids will be better at communicating than others. My son can talk the hind legs off a donkey if it’s a subject he likes, but will be silent and utterly non communicative if you ask about something he has no interest in. The fact that he finds interaction difficult doesn’t mean that he doesn’t want to interact at all, though – he loves people and is in the most part incredibly polite and personable.
6. Would your son/daughter like to come? We can work around their needs
My son has been to very few birthday parties in his eleven years and they’ve tailed off almost entirely as he’s got older. When another child at his old primary school invited him to his party last year I actually wept with gratitude. We know that it can be difficult to include our kids, but we are so very bloody grateful to those who make the effort.
Here are a couple of replies from a post on the NAS Facebook page, asking for suggestions for this article:
The best comments for me are always from people who have taken time to listen, try and understand and then thinking what they can do to help or be inclusive. It might be a party invite where the Mum knows of his eating issues and says “You can bring him a packed lunch of foods he will eat if you like”
And this:
If you or he needs a quiet spot at all today, you can use the room down the hall
7. It’s not your fault/I believe you/you are doing a good job
We really, really need to hear this sometimes, even if we already know it. However confident we are as parents, a lot of us have been in situations where our child has been utterly awful and we’re left to pick up the pieces (sometimes literally). And however much we know they don’t mean it, there’s often a tiny voice in the back of our head muttering ‘maybe s/he wouldn’t be like this if you were a better parent’.
Another response from the NAS page:
I think I would just like to be believed and not questioned all the time
As I hopefully made clear in the previous article, saying ‘have you tried/you should do this’ is not helpful. We have almost certainly already tried it and most of us have endless experts making suggestions already. What we need from you – our friends, acquaintances, people we meet on the street – is acceptance.
It really is that simple.
Now, the things you SHOULDN'T say
1. He’ll grow out of it
No, he won’t. He’ll get older and possibly learn to manage his autism, if he gets all the help and support he needs.
But he will always be autistic.
2. He looks normal to me
That’s the thing – if my son is in what (to him) is a safe environment, he will appear no different to a neuro-typical child.
Give it five minutes and he’ll be screaming the house down because his fringe touched the side of his face and frightened him.
3. Why can’t he get on the train, cross the road, be left home alone for a while at his age?
Because he’s autistic.
How he reacts today is no indication of how he will act tomorrow.
Today he’s perfectly capable of crossing that main road alone – tomorrow he might walk out in front of a lorry without a second thought.
4. Just make him do it!
Have you tried arguing with an autistic child?
They have a built in capacity for logic that can overrule the most brilliant of tactical minds.
My son can not only argue that black is sparkly white, he’ll reduce you to tears of uncertainty in the process.
5. He could do with a good hiding
People have actually said this to me and somehow they are still alive.
You wouldn’t try to beat cancer out of a child, so why suggest doing so to a child with an invisible condition?
6. Have you tried vitamins?
Have you tried getting as far away from me as possible before I hit you over the head with the endless supplements I use to try and keep him healthy because he will currently only eat white pasta, pizza and chocolate?
Don’t worry – next month it will be fresh veg and fruit juice. I’m just hoping it will all balance out in the end.
7. He can’t be autistic, he makes eye contact
Because he’s learned to, in order to fit in.
He’s almost certainly actually staring at the bridge of your nose and taking absolutely no notice of anything you’re saying.
8. Friendships are always difficult with kids
Yes, and they’re harder when you never seem to say the right thing and other kids don’t understand when you can’t play games because it means touching people.
9. I’ll pray for you all
I’d rather you came over and did the dishes while I lie on the sofa and try to ignore the yelling for ten minutes, if it’s all the same to you.
10. Did you vaccinate?
Oh DO shut up. (Make sure if you reply to this article to keep the conversation away from this point)
11. Ooh, like Rainman? What’s his special talent?
Rainman was about one person with autism – they are all different.
My son’s special talent is driving me to tears of frustration one minute then being so adorable the next that I can’t imagine ever having him any other way.
SOURCES: http://metro.co.uk/2015/12/15/7-things-you-should-say-to-the-parent-of-an-autistic-child-5548187/ , http://metro.co.uk/2015/11/30/11-th...y-to-the-parent-of-an-autistic-child-5492692/
Things you SHOULD say:
1. I don’t understand autism, can you tell me more?
Most of us knew very little about autism before we had kids, so you’re not alone! We’re happy to fill you in, just remember that our view is about autism as it affects our family and our views are likely to be different to the next person you speak to.
ASD-related issues affect people in different ways, so never be afraid to ask.
2. Are you okay?
The most obvious, and the easiest for both parties. Sometimes all we need is a friendly smile and a casual enquiry – even if the answer is a resounding ’No!’, it’s nice to know that people care. I usually go with a tilt of the head and knowing eye roll – accompanied with a mouthed ‘you okay?’ it can be enough just to let that parent know they are not alone.
Most people are well practised in dealing with their autistic child’s public meltdowns – nothing teaches tolerance than having to stand quietly by whilst your offspring screams incoherently at the top of their voice in the middle of a shoe shop. I learnt long ago that it’s usually easier to let my son yell a bit then shepherd him out of the store with the first pair of trainers I could find, crossing everything that they actually fit. But I have on occasion been very grateful for a stranger picking up my bags and helping me wedge them over my shoulders so that I didn’t have to let go of the screaming banshee in my other hand.
3. Can I help right now? Would you like this very large glass of gin/cup of coffee/shoulder to cry on?
As in, ‘can I do the shopping/run to the post office for you/go get you a newspaper’ – when we spend an awful lot of our time on high alert and/or filling in the endless paperwork that seems to come with ASD diagnoses (not to mention the appointments), parents of ASD kids almost always drop themselves to the bottom of the priority list.
You don’t even have to speak in order to help us – just do something that shows you care and/or empathise. We’re not expecting you to have any answers – hell, no one appears to have the answers, not even the endless specialists that end up involved in our daily lives have the answers – but a friendly ear and a cuppa can work wonders after a day of trying to figure out why our kid is utterly hysterical when all we did was put their chicken nuggets on the opposite side of the plate to usual (we didn’t even know there was a right side of the plate until now).
4. How are you?
So simple, yet it makes such a difference. Just knowing that others are thinking of you can sometimes be all you need to get through the day. But you have to mean it – there is a fair chance that we will tell you exactly how we are in great detail, along with flailing hand gestures and incoherent wailing noises. Do not panic! Keep passing the tissues and the chocolate and we will eventually wind down like a clockwork toy.
5. How are you/what are you up to? (directed at your child)
As with all people, some autistic kids will be better at communicating than others. My son can talk the hind legs off a donkey if it’s a subject he likes, but will be silent and utterly non communicative if you ask about something he has no interest in. The fact that he finds interaction difficult doesn’t mean that he doesn’t want to interact at all, though – he loves people and is in the most part incredibly polite and personable.
6. Would your son/daughter like to come? We can work around their needs
My son has been to very few birthday parties in his eleven years and they’ve tailed off almost entirely as he’s got older. When another child at his old primary school invited him to his party last year I actually wept with gratitude. We know that it can be difficult to include our kids, but we are so very bloody grateful to those who make the effort.
Here are a couple of replies from a post on the NAS Facebook page, asking for suggestions for this article:
The best comments for me are always from people who have taken time to listen, try and understand and then thinking what they can do to help or be inclusive. It might be a party invite where the Mum knows of his eating issues and says “You can bring him a packed lunch of foods he will eat if you like”
And this:
If you or he needs a quiet spot at all today, you can use the room down the hall
7. It’s not your fault/I believe you/you are doing a good job
We really, really need to hear this sometimes, even if we already know it. However confident we are as parents, a lot of us have been in situations where our child has been utterly awful and we’re left to pick up the pieces (sometimes literally). And however much we know they don’t mean it, there’s often a tiny voice in the back of our head muttering ‘maybe s/he wouldn’t be like this if you were a better parent’.
Another response from the NAS page:
I think I would just like to be believed and not questioned all the time
As I hopefully made clear in the previous article, saying ‘have you tried/you should do this’ is not helpful. We have almost certainly already tried it and most of us have endless experts making suggestions already. What we need from you – our friends, acquaintances, people we meet on the street – is acceptance.
It really is that simple.
Now, the things you SHOULDN'T say
1. He’ll grow out of it
No, he won’t. He’ll get older and possibly learn to manage his autism, if he gets all the help and support he needs.
But he will always be autistic.
2. He looks normal to me
That’s the thing – if my son is in what (to him) is a safe environment, he will appear no different to a neuro-typical child.
Give it five minutes and he’ll be screaming the house down because his fringe touched the side of his face and frightened him.
3. Why can’t he get on the train, cross the road, be left home alone for a while at his age?
Because he’s autistic.
How he reacts today is no indication of how he will act tomorrow.
Today he’s perfectly capable of crossing that main road alone – tomorrow he might walk out in front of a lorry without a second thought.
4. Just make him do it!
Have you tried arguing with an autistic child?
They have a built in capacity for logic that can overrule the most brilliant of tactical minds.
My son can not only argue that black is sparkly white, he’ll reduce you to tears of uncertainty in the process.
5. He could do with a good hiding
People have actually said this to me and somehow they are still alive.
You wouldn’t try to beat cancer out of a child, so why suggest doing so to a child with an invisible condition?
6. Have you tried vitamins?
Have you tried getting as far away from me as possible before I hit you over the head with the endless supplements I use to try and keep him healthy because he will currently only eat white pasta, pizza and chocolate?
Don’t worry – next month it will be fresh veg and fruit juice. I’m just hoping it will all balance out in the end.
7. He can’t be autistic, he makes eye contact
Because he’s learned to, in order to fit in.
He’s almost certainly actually staring at the bridge of your nose and taking absolutely no notice of anything you’re saying.
8. Friendships are always difficult with kids
Yes, and they’re harder when you never seem to say the right thing and other kids don’t understand when you can’t play games because it means touching people.
9. I’ll pray for you all
I’d rather you came over and did the dishes while I lie on the sofa and try to ignore the yelling for ten minutes, if it’s all the same to you.
10. Did you vaccinate?
Oh DO shut up. (Make sure if you reply to this article to keep the conversation away from this point)
11. Ooh, like Rainman? What’s his special talent?
Rainman was about one person with autism – they are all different.
My son’s special talent is driving me to tears of frustration one minute then being so adorable the next that I can’t imagine ever having him any other way.
SOURCES: http://metro.co.uk/2015/12/15/7-things-you-should-say-to-the-parent-of-an-autistic-child-5548187/ , http://metro.co.uk/2015/11/30/11-th...y-to-the-parent-of-an-autistic-child-5492692/
