I have been getting a few requests lately from new autism parents, asking me how I cope. With everything. And when I started writing this post I debated just leaving it as a big blank page. But of course learning to cope is no joke.
The truth is, I do not always cope. I should admit that straight away. There are two things that I find the hardest to cope with (these days). One is lack of sleep. If I am sleep deprived I can’t cope. Another is whingeing. Tantrums I can handle. Angry ones especially. Sad tears I can help with. But that low key whinge that starts at 4:30 am and just goes all day makes me lose my sh*t. I really really hate it. I have had days when I told my son to just ‘shut up’ already. And one particularly bad day when I actually smashed a bowl on the floor because of losing my sh*t. Please note, my son was not in the room, I cleaned it up straight away, and actually felt MUCH better after.
In the early days after diagnosis coping is very hard. I remember a celebrity here in Australia had his three year old son diagnosed with cancer. I was jealous of him. It was highly treatable and six months later everything was back to normal for them. Yes, I was jealous of cancer. Seriously not coping.
There are different levels of ‘not coping’ as an autism parent. Some involve losing your temper too easily, snapping at something you shouldn’t. Letting them watch more TV than you should. These are pretty harmless (unless they occur regularly and constantly).
But there is also a much higher level of not coping, that can occur if everything snowballs and is left for too long. Children being tied to beds or locked in their filthy rooms. Parents going for a drive with a child and never coming back. Or setting up complicated gas networks in the roof so everyone in the family dies painlessly. An autism parent not coping, especially over a long period of time, can be life or death. This is why you always fix your own oxygen mask before putting on your child’s. So this is a very important topic to address.
What are you not coping with?
The first question is always: what are you not coping WITH? Because there is SO MUCH to cope with, especially in the early days.
There’s the sleep deprivation. Most kids with autism also have sleep issues, and these may have different causes. Some are medical – things like sleep apnea or epilepsy. Some can be fixed with medication, melatonin being quite popular. It has certainly helped us! Other issues are behavioural. Everyone wakes up at night, usually several times. The trick is to learn to keep yourself calm and fall back asleep again.
There’s the grief. You have a vision for what your future will look like, and for most of us that choose to have children our vision centers on them. For example, my fantasy of the future always involved a large dinner table with children debating something or joking about something. Having a laugh. Very Kennedyesque. And finding out that this is simply not going to happen, because Level 3 autism, was heartbreaking. Instead I was going to be looking after someone that even though they grew bigger, would forever remain a child. Would be lucky to have a vocabulary of 100 words.
To be really blunt, at the beginning when I looked up adults with severe autism, I was terrified. (quick side note. Do not look up severe autism on YouTube. Bad idea. Really really bad). I thought ‘what did my tiny little boy, who has never hurt anyone, done to deserve this?’ And of course I worked really hard on blaming myself, thinking that this was somehow caused by something I had done. My rational mind knew this was not the case. But a rational autism parent can sometimes be an oxymoron.
Comparison and other evils
And everything around you conspires to make the grieving worse. It’s something that will never pass. You don’t know anyone else that has to deal with anything like it. Your relationships are all impacted because at least three quarters of the people in your life don’t see it, don’t understand, and are probably in deep denial. Many remain in denial for years. Oh and by the way if you have any other kids there’s about a 20% chance they will have it too. And every time you go out all you see are people with typical kids. Kids talking, showing their parents things, kids playing together while parents enjoyed a break. Kids being taken completely for granted. It is really hard not to compare when the comparison is right there in front of you ALL THE TIME.
There are many other things to cope with as an autism parent. There will be ‘behaviours’. Different behaviours for each child of course but almost always very challenging. Tantrums, meltdowns, no sense of danger, food refusal, inability to communicate what’s wrong leading to constant whingeing. You can repeat to yourself ‘it’s harder for him than for me’ as many times as you like, it’s still hard to live with. But if you do lose it at your child, you feel even worse. I mean, who screams at an autistic two year old? What kind of person?
Plus there’s the thirty minute meltdown your kid had because the wrong cartoon came on the iPad. The other tantrum that happened out of thin air and you honestly have NO IDEA if it’s because he has a particularly bad form of appendicitis or simply because you accidentally moved one of the cars he lined up so carefully on the floor.
And at the same time you are dealing with your mum who ‘doesn’t see it’ and spends hours every day sending you articles about miracle cures. Family members who honestly think they can ‘fix him for you’ if you just leave him with them for a few hours a day. In one week. Possibly a spouse that doesn’t deal very well with it and retreats into himself. Some men don’t deal very well with things they can’t ‘fix’. Not to mention other children who will also be affected. Which combination of things to ‘cope’ with you have will be different. But relationships are often very difficult in the first twelve months after a diagnosis. Probably nearly every important relationship in your life will be strained, partially because of your grief, partially because of everyone else’s.
And there’s the ‘urgency’. The sense of urgency that comes with any research into therapies around autism. A (quite wrong) feeling that if you don’t get onto everything right now, or preferably six months ago, your moment will pass and your child will be stuck this way forever.
So you research therapies. Try everything. A drowning man clutches at straws right? A lot of autism parents (especially the ones that aren’t coping) clutch at EVERYTHING. With or without evidence. Which only adds to their burden. They try the diets (very hard with a child that refuses food, and expensive, and time consuming). They pay huge amounts of money for supplements and spend lots of time trying to get their kids to actually take them. Some try weirder things. I know at least one child personally who nearly ended up in hospital because of malnourishment as the foods he did eat were not on the ‘autism special diet’ list and he refused to eat the foods that were on the list. Of course it did nothing for his symptoms anyway.
Cost and time of therapy
Then parents mortgage their houses to pay for therapy. Try to do six hours a day themselves. Get obsessed with the 40 hours a week, when their kid isn’t even two yet and still needs to nap. Read everything there is to read, while still juggling their two other kids and their insistence on still eating three square meals a day.
You don’t sign up for this. It just happens
A low point of mine was before Michael’s diagnosis, when he was just under 18 months old. He was teething (late teether), it was winter and he spent those three months sick nearly every single week, and waking up every 20 minutes all night. A handyman/family friend (parent to three children) came by at the time. He looked at me as I complained and said, ‘You didn’t sign up for this’.
And it’s true. I didn’t sign up for this level of parenting. Very few special needs parents sign up for what they end up getting. It is very different to what we imagined and it is very different to what everyone else gets. Some of us cope better, some cope worse. It’s no one’s fault.
But there are some things you can do that can help you ‘cope’.
Some coping strategies
Get as much help as you possibly can
The biggest determinant of how well you cope as an autism parent is how much support you have. Proper support. Someone that can take him all day while you sleep/make dinner/finally have a hot cup of tea. And I know there are probably only one or two people on earth you can trust to do that.
To some extent this may be out of your hands. You may be able to financially afford the amount of therapy hours and therapists you need, or you may not. But if you can, get them. You may be able to get a cleaner, your mother may be a natural therapist, your spouse may be wonderfully supportive and helpful.
Absolutely anything that doesn’t have to be done by you, should be done by someone else if it is possible. Online shopping is awesome and often free. Maybe you can get takeout every day. I like to get frozen vegetables in little plastic packets, steam them in the microwave, add a nice sauce, and have that for lunch. Five minutes work, healthy lunch, and no clean up. Maybe your mother in law can take your other kid out for the day or your spouse drop the other kids off at school. Unless your spouse is a brain surgeon and needs every minute of sleep or people will die, they should be getting up at night just as much as you. And you should sleep as much as you can because if you don’t, people might die. Important people, like your children. Driving while tired is dangerous!
And to the level that you do have any control over this, you should make sure you get the help. When choosing a therapy style, make sure it is a type that lends itself well to training other people to help you. As well as evidence based, of course. It is not lazy parenting to hand over as much of the formal hours as you can. It is smart parenting. Survival parenting. Often (depending on your child’s age and napping habits) the very best solution is to find an in-centre program and just dropping them off at 9 but they are not always available. Otherwise, building a good in home therapy team should be a priority over everything else.
Don’t do too much therapy yourself
For optimal mental health, I strongly believe parents should not do more than five hours of ‘formal therapy’ a week. They will already spend more than that managing their team, keeping up with the programs, dealing with tantrums, and generalizing skills to outside therapy. Until your team is built, an hour spent looking for, interviewing, or training a new therapist is better than an hour spent doing therapy yourself. Because once this new therapist is found and trained up they can do six or nine hours a week.
If building a home therapy team, it is best to hire more therapists to do more hours. The best size for a team is four or five junior therapists (if you plan to do the recommended 35 hours a week), one senior and a supervisor. Junior therapists are students. They are always ‘out’ for various reasons. The more of them there are, the more they will be able to fill in for each other and the less each one’s absence will affect you.
In a theoretical week Michael is scheduled to have 32 hours of therapy. This week it will actually be 18 hours because of Melbourne Cup and therapists’ sports commitments. And clinic. Last week we had less because Michael caught a cold for a few days. You will always schedule more therapy than your child will get. So schedule heaps.
Do anything to help with sleep (yours and the little one’s)
When you start therapy there are so many things to work on. People ask me ‘what particular goals do you have’ and ‘what do you think are his particular challenges’. And the answer was EVERYTHING!!!! He needed help with EVERYTHING!
He slept badly. Which affected his behaviour. He threw tantrums. And couldn’t communicate at all. Not even to drag me somewhere. If he wanted something he pretty much stood where he was and screamed until I guessed what he was asking for. There were no play skills, no fine motor skills, no signs of him figuring things out or concentrating on them. Plus there was the food refusal. And did I mention he slept really badly? All he seemed capable of doing at that stage was slide things around on the floor, flap cards around, and whinge. He was really good at that.
With time all of these things got addressed. And of course they interact. The bad eating meant constipation, which contributed to the poor sleep and general crying. The lack of communication affected his mood, and obviously made him very frustrated. As it would with anyone. But at the bottom the sleep affected everything.
So fix the sleep. Take them to a sleep centre. Get medical help. Talk about it with every single specialist you can and put in place every solution that exists. Medical or non-medical. Other therapy priorities should include anything that can affect sleep, before they target any other deficits. Food. Tummy problems. Behavioural issues.
Admit to yourself you are not in control
One reason why parents rush off to have as many therapy hours as possible and stress about the dreaded time after five years old when all is lost (it isn’t) is that they actually think they are in control of outcomes. Now, it is great to get lots of therapy. It will help. All the evidence points to large potential improvement. So by all means build up your team and move towns to get to a better therapy centre if that is something you can do. BUT…
Therapy centres have charts which show outcomes of students. Some students shoot straight up after therapy. Others have this very gradual upwards slope. Barely there but still up. And some stubbornly go down. And yes getting good quality therapy for a certain amount of hours is important to this slope. But one of the biggest determinants of what happens on that slope is nothing to do with you or therapy.
It is to do with what the starting point was. And a bit of luck. Some kids have epilepsy, anxiety, an intellectual disability in addition to autism. Others don’t. If they already have some words when they start, they will have more by the time they finish. Or maybe they have no words and have trouble even with pictures.
When we started ABA they showed us a video. On the video were two children. Both started therapy around age three, both doing the same exercises, hours, everything. One went to a mainstream school, went on to university, had a career. He only had to do therapy for a short time. The other one has a total of 70 words and did therapy for the rest of his life. His mum said it was still worth it because each word is priceless. We all hoped against hope that our kid would be like the first one. And as a mum whose child is more likely to be like the second kid (although definitely with less challenges) I completely agree. Every word is priceless. But so is your ability to keep things in perspective and relax sometimes.
Do the bare minimum
Your sheets will not be ironed, your backyard will probably not be swept, and you shouldn’t remember the last time you cooked a big fancy dinner. On days when there are no therapists coming and no preschool (or whatever help you have arranged) dinner will be takeout. Watching an hour of Gilmore Girls while your kid spends an hour on his iPad is important oxygen mask applying time. While eating chocolate and drinking tea. I’m serious.
Organise your day carefully, prioritizing rest and breaks. Take out anything that is not ESSENTIAL. I mean that to include toys, activities, loads of laundry. Practise minimalism. Don’t buy a toy unless your therapist told you to or unless you are absolutely positive your child will need it. Ask for vouchers and t-shirts for Christmas.
Always ask ‘if this isn’t done, will anyone die?’ Odds are, they won’t. The best way to tell if something is important? Think what would your partner do. Dads are MUCH, MUCH better at prioritizing their own rest and wellbeing than mums are.
I am not trying to justify crappy parenting here. These strategies are all supposed to work together and the therapy bit is right at the top. That is definitely in the bare minimum. And as your child improves and time passes (usually after the first twelve months) you will be able to raise your standards. My beds are actually usually all made these days and I make a nice home made dinner most nights. But treat the first twelve months of therapy the same way you treat the first six weeks of a new baby. Be excited if you get one useful thing done per day.
Time will help with everything.
In the first six months the grief is crushing. You know this autism thing will never pass. And you think that the sadness you wake up with every morning will always be there. It comes up when you try to imagine the future (my tip – don’t, you have no idea what it will look like. Keep your plans for twelve months ahead and no further). Every time you see a happy family. Every time you wake up in the morning and remember.
To some extent it will go, and it will come back. Weird things trigger it. For me it’s often brought on by seeing some thirteen month old interacting with her mum on the playground. Or seeing a dad playing catch with his little son and feeling so sorry for my husband who may never get that even though he deserves it more than anyone else I know.
But human beings aren’t made to grieve forever. It fades. No matter what ‘it’ is caused by. As long as you are doing all the other things listed above (especially fix the sleep and get help) in six months you will feel more like your old self. It may take longer. But across the board, human beings are made to ‘get over things’. Even serious illnesses leave us at the same level of equilibrium after six months that we were at before. As do lottery wins. It’s just how the mind works. Especially since it is likely that the therapy will have started helping, the skills will start coming in, and you will have learned how your child works to some extent.
Find your tribe.
Coping is much easier in company. Finding other autism parents is important. It may not be physical company (because everyone is too busy doing therapy at home or they may be in other countries) but an online tribe can help lots too. Just seeing other people going through the same things as you, or who have gone through them and come out the other side, is invaluable. Comparing against someone that is actually comparable. Therapy waiting rooms are also great places to chat. Or with other parents in the special preschool or school. Also, learn to smile and nod a lot. Both autism parents and your family and friends will make some pretty wild and wonderful claims. Just do your own research from good, reputable sources, and smile and nod. Arguing and getting angry is completely pointless.
Modify your expectations and stop comparing with typical children/siblings
This will depend on your child. But after six months of therapy you may get a better understanding of their future trajectory. Some kids shoot straight up and go from five words to fifty in three months. Others are more slow and steady. And a small minority may in fact get worse. Unhappiness comes from the gap between expectation and reality. If you keep looking at the older sister or the super bright cousins, you will not help your child and you will make yourself miserable. Sometimes facing reality involves celebrating small milestones like the first time they go up and down the stairs by themselves, even if it’s at age four.
Yes it’s true that people take their children for granted. And it’s really frustrating to see that, as an autism parent. But odds are you ‘re taking things for granted too. On a bad day I will try to remind myself of all the things i have to be grateful for and I know I take a lot for granted. Living in Australia. In the 21st century. That’s pretty great. Having a home, having clothes to wear and when they get holes being able to get new ones. Access to clean water and nice food. My wonderful husband, my family. How sweet and gorgeous my little boy is. My expectations are so high because I live at a time and in a place when I can afford to have high expectations. I can modify them a little.
Talk about something other than autism
Maintaining your non autism parenting relationships is important. And talking about your best friend’s boyfriend problems or discussing whether or not there are going to be way too many Kardashians soon is important. Get excited about the royal baby. Never feel guilty if you are working. Or if you need to cut down on work. Whatever helps you cope (and helps with the bills) is good. If you can’t do these things, entertain yourself at home. Stupid TV shows are great. Gilmore Girls is the best because it’s available on Netflix for $12 a month and all their problems are entirely self-manufactured. Even just listening to music while you cook/rock your child to sleep for two hours/try to drown out a particularly loud tantrum makes life more bearable.
Learn behaviour management techniques
Getting trained as an ABA therapist (junior of course) or learning to do whatever therapy your child does (even if you only do a very little bit per week) is very important. It will give you coping tools for the bad behaviour. They will teach you to decipher why your child is upset (especially if they are nonverbal this can be very hard). This is what your senior therapist/supervisor/whoever you have hired is there for. And it will mean you can generalise their skills from the therapy room to everyday life. You will still have times when you are not sure what to do and you feel lost. But they should decrease.
Get professional help if you need to
Some people need to go to therapy themselves after a diagnosis. There is no shame in this. And for some people medication is also important. Especially if you have any thoughts of harming yourself or your child, your first stop should be with a professional.