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The Awesomely Big List of Ways To Help Parents of Autistic Kids

The Awesomely Big List of Ways
To Help Parents of Autistic Kids

Image: rogiro

Families with autistic kids need help, and a lot of it. But it can be really hard sometimes for other family members and friends to know exactly what kinds of support are needed.

The good news is that there are tons and tons of ways you can help. Yes, tons! So if you've ever said "I really want to help but I don't know how"... then this is the post for you. Behold, an awesomely big list.

1.  Talk about it

Autism is a big deal. It takes up most of the thoughts and minutes in the day of parents as they try to learn about and help their kids, especially in the beginning. So don’t ignore the elephant in the room, no matter how uncomfortable or strange it might feel to you. Your friends might not be ready to discuss it, or sick to death of hearing the word, but they’ll let you know and will be grateful that you cared enough to ask.

2.  Learn what you can

Although autism is much more widely understood than it used to be, your friends still have to explain it to people all the time. They’re constantly answering questions - What is autism? How do you get it? Is it the same thing as Aspergers? Can it be cured? - and it can get tiring after a while, not to mention boring as hell. Having a support network of people who already know this stuff will ease their load, and it’s a great way to show them that you’re interested and want to help.

3.  Allow space for acceptance

Finding out that your child is autistic can be a huge shock. Suddenly everything that your friends knew about parenting has changed - they’re confused about where to go from here, unsure what the future will be like and scrambling to learn a whole new set of instructions that weren’t in the baby manuals. They might be worried, scared or wondering if they can cope. So don’t expect them to be on top of all that right away, give them time to accept this new path that they’re on.

4.  Work through your own feelings

How do you feel about the fact that someone you know has autistic kids... are you shocked? Saddened? Worried? Interested? Confused? There’s no right or wrong way to react to this kind of news, but obviously some of these feelings are going to stand in the way of your ability to be supportive. Don’t make it your friends’ responsibility to help you get okay with this, that’s your job - and the sooner you can do that, the more support you can give.

5.  Learn the lingo

Autism comes with its own vocabulary, and learning what the words mean will help you take a big step into your friends’ new world. Having people around them who understand (without them having to explain) will make them feel supported too. Don’t be afraid to use the word autism, but be aware that some people have a preference about the words they use to describe themselves or their kids - Aspergers, autistic, child with autism. Ask your friends which words they choose.

6.  Accept the diagnosis

If your friends tell you that their child is autistic, don’t doubt them. Don’t say that he doesn’t look autistic, or try to reassure them that all kids do the things that their kid is doing. It can take a long time for parents to make their way to an autism diagnosis, so help them to feel supported and confident that they know their child best.

7.  Set up your home

Make it easy and safe for your friends to come visit. Ask about favourite foods, what their kids like to play with and the DVDs they like to watch so everyone will feel more comfortable when they visit. Ask if they have any visual supports that they use at home that you can replicate at your place (like a sign to show where the toilet is and how to use it), and whether there are any safety requirements (like door locks) so your friends can relax during their visit.

8.  Be flexible

Life with autistic kids means a full schedule, and plans often have to change unpredictably at the last moment. So be flexible when making plans with your friends, and accept that they may not always be able to make it - but don’t stop inviting them! They need to know that you still want their company.

9.  Offer play dates

Friendships can be tricky waters for autistic kids to navigate, so play dates are often few and far between. Inviting your friends around to play with your kids or offering to meet at the local playground can be a really welcome way of providing safe and rewarding social interaction for them.

10.  Stick to the facts

There’s a crapload of myths and misinformation floating around about autism - autistic kids never make eye contact, everyone with autism is a savant, autistic people can’t feel empathy. It will be a huge support to your friends if you can educate yourself and those around you about these misconceptions.

11.  Learn to interact

Ask your friends to teach you how to build a relationship with their kids. They may not be interested in tossing a football around with you like your other nephews, but that doesn’t mean they’re not worth getting to know.

12.  Babysitting

Your friends need some time out from the constant stress that they’re under. It really is relentless and no matter how tough and resilient they are, they’re feeling the strain. You may not realize just how hard it is for them to find someone to look after their kids - they can’t just call on a babysitting service, so you could literally be their only option. You might feel nervous about looking after their kids, but they’ll walk you through it and it’s only for a little while... you’ll survive!

13.  Grocery shopping

Supermarkets are a nightmare for autistic kids. Lights, noises, smells, strangers, waiting, getting in and out of the car - all of these can be really uncomfortable for kids with autism and result in meltdowns and behaviour that’s hard to manage. Having someone offer to go and do that for them would make most parents swoon with gratitude.

14.  Running errands 

Even posting a letter can be tricky when you’ve got an autistic kid in tow, so it’s likely your friends’ To Do list is as long as Santa’s. Ask if there’s stuff you can take off their hands - returning library books, buying replacement sprinkler parts, getting the dog clipped, going to the pharmacy. Offering to do things that involve waiting in line would be particularly helpful.

15.  Cooking

When you have kids who are selective eaters, cooking separate (and more interesting) meals for yourself can be tricky. There’s not a lot of spare time and evenings are usually one of the most difficult parts of the day. So your friends might really appreciate having some readymade yummies in the freezer that they can reheat (don’t forget to check whether their kids have any dietary restrictions or allergies).

16.   Chores

Nobody likes doing housework, but your friends have extra reasons to avoid doing it. Aside from just not having the time or energy, appliances like washing machines and vacuum cleaners can be painful to some autistic kids with sensitive ears. So maybe you could offer to pop over and vacuum while your friends are out of the house, or pick up a load of laundry to do at your place.

17.  Listening

Your friends’ heads are exploding with all the stuff they’ve had to cram in there lately. They need to let some of it out, so give them a safe place to do that. Lay on the coffee and tissues, and make time to sit and listen to their concerns (or questions/tears/rants). You don’t have to solve all of their problems, just be there to act as a sounding board every now and then.

18.  Financial help

There are a lot of reasons why your friends might be feeling the pinch. There could be less money coming in from missed work or one parent needing to stay at home, and definitely more money going out on expensive diagnostic appointments, therapy, equipment, safety gear and training. So if you’re in the position to help out financially, let them know. It’s unlikely that they’re going to ask for this kind of help, but it really will make a big difference. Maybe you could offer to pay for an extra therapy session or two, buy some equipment or hire them a housecleaner.

19.  Fight the good fight

The rate of autism diagnosis has been escalating but unfortunately the access to services and funding hasn’t kept up with the demand. There are long waiting lists for everything that your friends need and it’s costing them a bundle. The people who can make things happen need to know about it, but who’s going to tell them? The people most affected are too busy dealing with autism to fight for it. So you can help by getting involved - write to politicians, volunteer your time for fundraising, drum up media interest or get yourself a spot on decision-making boards. On a more personal level, ask if there’s a particular problem your friends need help dealing with, like securing an aide at school.

20.  Hold off on advice

You might have a lot of opinions about what your friends should be doing - therapies or treatments you read about, doctors they should see, discipline techniques they should be using - but keep them to yourself for now. It can be frustrating to see people you care about in trouble and feel like you have all the answers, but they have a lot of people in their ear telling them what they should do. It’s stressful and confusing for them, so you can help by being the calm in the centre of their storm. When they need your advice (and they will) they’ll ask you for it.

21.  Talk about today

Progress is a really hard thing to predict with autistic kids, so your friends probably have no idea what the prognosis is for the future. So talk with them about their current challenges and successes rather than whether their kid will be able to live independently or go to college.

22.  Don’t spill the beans

It should go without saying that the things that your friends share with you about their child’s diagnosis and behaviour is for your ears only and not fodder for Facebook or chats outside the classroom. Honour their trust in you by protecting their confidentiality.

23.  Look after pets

Finding the time and opportunity to walk the dog or change the water in the fish tank can be really hard to do when you’ve got autistic kids who need constant supervision. Offer to take their cat home for a grooming session or let their dog join you on your morning run.

24.  Stay in contact

Find out the best way to keep in touch with your friends - maybe they prefer email or a text instead of a phone call, so they can get back to you when they have time... which may be many months from now. But let them know that you want to stay in contact with them and you’re there whenever they might need you.

25.  Cut them some slack

Your friends really want to come to your party, and call you more often. They didn’t mean to forget your birthday or ask how things are going with you, and they’re really, really sorry that they burst into tears when your son made the soccer team. One of the best things you can do for your friends is know that they still love you (despite being missing in action), remember why you love them and have faith that you’ll see them again when things settle down a bit. And don’t give up! They appreciate that you keep trying.

26.  Help them to get organized

There’s so much to keep track of when you have autistic kids - bills, appointments, referrals, assessment reports, worksheets, exercises, application forms. Add to that all of the books to read, equipment to use, people to call, things to remember... and you can see why your friends might really appreciate some help on the organization side of things. You could buy them a calendar, offer to do some filing, set up reminders on their phone, make copies of important documents or organize their browser bookmarks.

27.  Avoid information overload

It’s great that you’ve found all those new blogs and articles about autism, but go easy on how much of it you send to your friends. They’ve got information flying at them thick and fast, and might not have the spare brain space to hear about every autism-related news story or breakthrough just now. Picking out the best of the bunch in an occasional email will be enough to show them that you care without drowning them in information overload.

28.  Educate the kids

Teach your kids about autism, especially if they will be having play dates with your friends’ kids. Explain what autism is and what some of the common behaviours are all about. Show them how to ask an autistic kid to play, and ask your friends about the kinds of things their kids like to do.

29.  Skip the remedies

Curing autism is a sensitive subject. Not all parents believe that autism is something to be recovered from, and many autistic adults find the very idea of a cure to be offensive. So if you happen to come across an ad, website or news story purporting to offer a breakthrough remedy for autism, make sure you know how your friends feel about this issue before approaching them.

30.  Be fussy about research

There’s a lot of money being pumped into autism research, but that doesn’t mean that the findings of these studies are reliable or even useful. Be critical about the reports you read, particularly the ones that claim to have found possible new causes or risk factors for autism, and only share those that come from reputable sources.

31.  Take over the watch

Autistic kids often need constant supervision, which is exhausting for parents and can stop them from being able to join in or fully enjoy social gatherings. Offer to set up a tag team to take turns supervising so that your friends can get something to eat, have a swim or even (hallelujah) go to the toilet in peace.

32.  Show that you’re aware

Ask your friends if they have a preferred way of raising awareness about autism - perhaps they like to participate in World Autism Awareness Day activities or have a fun run you could sponsor them in.

33.  Learn how to use aides

Ask your friends whether they use AAC devices to help their kids communicate (such as sign language, picture exchange, communication boards or speech apps on the iPad), and whether it’s something that you can learn how to do too. Having people around them who can communicate with their kids (and are interested in doing so) will be a big support.

34.  Don’t forget the rest of the family

Having an autistic kid in a family can be tough on siblings. It’s hard for parents to fit in all the things they need around therapy appointments and managing difficult behaviours. Offer to lend a hand by picking up siblings from school, helping them with their homework, driving them to their soccer match or taking them out for ice cream.

35.  Talk about other things

In the early days it’s common for parents to become completely absorbed in everything to do with autism, but there comes a point where that starts to get really boring. Your friends are still the same well-rounded and interesting people that they were before they had kids... they just don’t get many opportunities to be reminded of that at the moment. So follow their lead and bring up other topics, or come right out and ask if they’d rather talk about something else.

36.  Get involved with special interests

Some autistic kids can become so intensely fascinated by something that it becomes all that they want to do or talk about. This can be exhausting on parents, especially if they don’t feel quite the same enthusiasm, so you can share the load by offering to learn about the topic and spend time playing with or listening to their child.

37.  Celebrate the milestones

Autistic kids are still kids - they lose baby teeth, learn how to walk, laugh and do funny stuff just like other kids do. Their parents want to enjoy these stories with you, to share their successes as well as their challenges. There will be times when their kids will reach these milestones in a different way or age than other kids, but that doesn’t make them any less exciting. Reaching a milestone is always something to celebrate, so when your friends have happy news to share don’t compare that to anyone else’s achievements - just chink that champagne glass!

38.  Keep an open mind

A lot of the decisions that your friends are making might seem weird to you. Maybe they’re too harsh/lenient/protective with their kid or sound really pessimistic about his future. You can’t believe how short their fuse is these days and worry that they’re totally ignoring their other children. Remember that everything is new and strange for them and the old rules don’t apply, which can be hard to understand when you're on the outside. So try to keep an open mind about the stuff your friends are doing, and when in doubt remember this one thing: these are smart, loving people who are having a hell of time adjusting to something they didn’t see coming.

39.  Stay for the long haul

The challenges involved with parenting autistic kids continue long past the early childhood years. Your friends are going to need help for a while, so don’t stop offering and make sure to let them know that you’re not going anywhere.

 

The bottom line

Every parent of an autistic kid needs help and support, but for whatever reason most will probably never let on just how much they do.

So don’t ask whether they need help...ask what kind. Admitting that you need help is hard for some people (I’m one of them), so one of the best things you can do for your friends or family member is not to wait for them to cry out. Assume that they need help. Assume they need lots of it, and they need it now.

I’m pretty sure that nobody was ever offended by someone offering to help, so what have you got to lose?

I've created a PDF of this list to make it easier to share.
You can pick it up from the Downloads page.

This article was first published in January 2013.

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