Are any of these familiar?
Your good friend tells you with tears in her eyes that she is worried about her son, who no longer seems to want to be cuddled, look at his parents, or do anything other than spin the wheels on his truck.
You hear a child screaming in the next aisle while you’re out shopping. As you turn the corner you see the child on the floor, slamming their head repeatedly against the hard concrete, while the very frazzled mother is trying to juggle the shopping trolley, a crying toddler, and the screaming child.
In the middle of the church service you become aware of the family sitting in front of you, trying vainly to quieten down their son as he talks incessantly about the toy he is holding in his hands. You notice another family whose daughter is wearing large headphones and rocking along gently to a tune only she can hear.
While at the playground, you see an older boy shove a small girl off the swing, before climbing on himself. The boy’s mother rushes over to apologise to the girl, and pulls her son off the swing. As she leads him away, he begins screeching and wailing loudly. He tears at his hair and bites his arm, while his mother has to forcibly drag him to the car.
Welcome to Autism: a land where nothing is quite as it should be, and which can be a very lonely place, despite the growing number of inhabitants.
If you’re only visiting Autism land, rather than living here permanently, you may wish to get to know some of the population, or feel that you’d like to help them somehow. So how can you offer help when you might not be sure exactly what sort of help is needed? Perhaps you’ve even tentatively made an effort, only to be rebuffed by a parent who assures you that, “everything is fine” and that no help is required.
Every family and every child will be different, so the best advice I can offer you is to ask. Ask them repeatedly if necessary, as no matter how often they assure you that they don’t need help, the chances are, that they really do. A lot of us are not only too proud to tell you just how tough life is, but we’re also aware that most people don’t want to hear about the realities of life with our special children. It can be difficult to tell you how worried we are about our children’s future, or admit how overwhelmed we are with their daily needs and the financial burdens we often face. Sometimes, we may not even know how you can help us – we’ve been so busy just trying to make it through the day and struggling on by ourselves, that the concept of assistance can be too much to deal with right now.
Thankfully, quite a few people have written about this very topic, so I’ve picked a few of them out and linked them below for you. 🙂 From a personal point of view though, here are my ideas:
Out in public:
- Be polite. Don’t stare, don’t judge the behaviour and don’t give advice. Believe me when I say that if our child is having a meltdown in the supermarket, we are even more uncomfortable than you are. Truly. If there was anything we could do to stop it, we would – and we’ve no doubt tried everything that we could to avoid it beforehand.
- Smile – we won’t bite your head off. Well, not always. Sometimes we’re so sensitive that everything seems like an attack so we may not interpret your friendly gesture correctly. Having said that, sometimes it’s actually easier if you could just pretend you didn’t see anything. If you could also pretend that you’re deaf and cannot hear the ear splitting screams our children emit, that would really help, too.
- Offer to help when we’ve obviously got our hands full. Offer to push the shopping trolley or the pram, to juggle shopping bags out to the car, to watch the toddler and entertain them with a smile while we try and stop our other child taking all their clothes off in public. Please remember – it is nearly always preferable to have help with anything or anyone OTHER than our child with Autism. Our children are often very sensitive, and the wrong type of touch, or a touch from a stranger, can set them off even more. The exception is when our children are obviously stronger than we are (and you’d be surprised how early that happens) and we may need help to restrain them before they hurt themselves or someone else.
For friends or family:
- Listen. Educate yourself by asking questions and doing some reading. Ask your friend for book recommendations or websites, even YouTube videos if reading is not your thing. Offer to go to seminars with them or for them, and take notes for them while you’re there.
- Offer help with household tasks, like shopping, dishes, washing or cleaning. Take the ironing or washing home with you (check that your wash powder is fine to use as we often have allergies in the family), or stay for an hour and fold some washing. Please.
- Cooking a meal or some snacks will be greatly appreciated, but please be aware that Autism families may often be on special diets, and we would really appreciate your support in this. Those of us on special diets are often trapped when it comes to attending social functions. Our children will want to eat anything that’s available (and it’s rarely diet legal), and we have to deal with the fall out. That may take the form of behavioural issues, disgusting nappies, rashes, non-stop screaming or self-harming, and we’d really rather avoid all those. For a great article on this particular topic, please head on over to read 5 Easy Tips for Being an Awesome Host to a Family with Food Allergies.
- Offer babysitting or respite. Not all children with Autism will easily settle with an unfamiliar carer, so unless you see a lot of the child, this may not be suitable. For other children however, volunteering an hour or more of your time to look after them, could be the one thing stopping mum from having a nervous breakdown. The same applies to marriages affected by Autism – if you can look after the children while mum and dad have two hours to go out for a meal and reconnect, you may just have saved a marriage.
- Provide financial support. Most people would rather die than ask for money, but trust me – we need it. Whether you give us a voucher for the local coffee shop so we can escape there while you babysit for an hour, or a gift card for the local supermarket, it would be more than welcome for most of us. If you’re able to take on the cost of a regular item – such as buying an expensive supplement or medication or paying for a specific therapy, it would help ease a huge burden on the family finances. There may be an Autism conference that we would like to attend but simply can’t afford to – perhaps you could help out there.
For those seeking to help a family at church, a lot of the above will apply. There are some things that would help to encourage special needs families to attend a worship service, and obviously this will depend on the style of service you have and the size of your church.
- Be aware that a lot of children with Autism have sensory issues with noise, being touched, and even the feel of furnishings. These children may need to be accommodated in a separate room where it is quieter, and where they can move around without disturbing others. They will need either a dedicated volunteer whom they know and trust, or at least one of their parents to watch them.
I was inspired by a wonderful Christian mother from The Thinking Moms’ Revolution, who wrote about Autism and the church. She discusses the issues that Autism families often face with church attendance, as well as some ideas as to how the church could help overcome them. Please take the time to read her blogs on the subject -— sadly she has lost her battle with cancer and is now in Heaven, but her writings live on to inspire us.
Hopefully that has given you some ideas as to what to look out for in your interactions with families living with Autism. When you feel like reading up more on the topic, here are the promised links:
For those of you who are living in Autism land with me, I’m sure you’ve often thought of ways that others could help you. Why not share your thoughts with all of us by leaving a comment below?