“As a first-time mum, I wasn’t taken seriously. The impression I got from professionals was that my expectations were out of line and that I was exaggerating.” But Maria Delaney knew something wasn’t right. A later diagnosis of autism explained her baby’s sleep issues…
Maria Delaney is a mum-of-two boys – aged six and two – and lives with her family in Ireland.
What were your sleep expectations with your firstborn baby?
Like most pregnant first-time mums, I read a lot of baby books before Benjamin, our first, was born. So as his birth approached I thought I was “fully prepared”. My general expectations were that as a newborn, my baby would nap most of the day, waking every two hours or so to feed, change and go back to sleep.
I was also expecting to wake at night in three-hour intervals to feed my baby, who would then magically go back to sleep once fed. I thought that this would be our norm for the first twelve weeks or so and that it would get better after that. After all, according to my mum, I slept through the night from six weeks – so you know, I was destined to have a baby that was similar.
What was sleep like at the beginning, and how did it progress over time?
From Benjamin’s very first night in the hospital, it was obvious sleep was going to be a challenge. I clearly remember the first night: he slept from 9pm until about 2am, which was great, and then he did not fall back to sleep at all.
I was exhausted by the time the midwives came to check on me in the morning and totally overwhelmed as to how I was supposed to get him back to sleep. This pattern continued, it took ages to put him down to sleep in the evenings, he’d sleep for the first two to three hours fine but after that, I just wasn’t able to get him back to sleep. By the time he was a month old, I was totally sleep deprived.
Another issue people with autism suffer with is anxiety. Things must be just right to make them feel safe
At what stage did you start to feel concerned?
I had voiced my concerns at our two-week and six-week check-up with our GP, and again anytime we went for any vaccination visits etc. I think, as a first-time mum, I wasn’t taken seriously. The impression I got from professionals was that my expectations were out of line and that I was exaggerating.
I was given so many suggestions: pop the baby in the pram, get him a bit of fresh air and he’ll dose off for a nap. Never let him fall asleep at the boob, he’ll never get out of the habit. Put him in his cot sleepy but not asleep so he’s not shocked by an unfamiliar setup if he wakes and he will be able to fall back asleep himself. Use a sound machine, play soft music, wrap him in a swaddle, put him in a sleep bag, give him a bottle going to sleep rather than breastfeeding him, as he will be fuller for longer and should hopefully sleep longer.
But none of these suggestions worked for various reasons. Benjamin would completely lose it and start excessively crying whenever we put him in the pram and the cot. His cries were extreme like he was in a very panicked state. I noticed at the three-month mark that he just never stopped moving. You couldn’t get a photo with his legs and his arms still.
At nine months, it was the final straw when we tried controlled crying it out. He cried from 7pm until 5am when he fell asleep in a sitting position in his cot while still sobbing. I knew then that something was off and I wasn’t going to ever put him through that again.
When was Benjamin diagnosed with autism?
He was diagnosed late enough with autism considering its severity. He was diagnosed as moderate on the autism spectrum at the age of four. I think this boils down to not being listened to by professionals in his first year. It was then that I was voicing my concerns but professionals were normalising his behaviour by fobbing me off with a few suggestions to try.
I stopped telling healthcare professionals – and even family and friends – the struggles we were having with him. I felt like I wasn’t being listened to and I was being judged for not just getting on with it. It was at the age of three when he was non-verbal and showing multiple traits of autism that healthcare professionals started to investigate the possibility of autism.
To other parents who are concerned about their child’s sleep patterns and behaviours, don’t be like me and let people silence you
Was there a quick connection made between autism and him not sleeping through at night?
Yes, when autism was mentioned as a possibility for Benjamin, sleep and other struggles he was dealing with made a lot of sense to me.
Now that you have made the connection, do you know why autism affects nighttime sleep?
Now that I have made the connection between autism and his sleep issues, I can understand how it was so hard for Benjamin to sleep. Often people with autism have difficulties with regulating their sensory input. Think of our senses – sound, sight, smell, taste and touch… most people can filter out different sensory inputs but people with autism struggle with this. A dim street lamp or even bedside lamp would bother a child enough that it would affect their sleep. It would seem so much brighter to them. Or maybe, their clothes would be too scratchy against their skin. Or they wouldn’t like the feel or the blankets around them and the sheets under their head due to their heightened senses. Interestingly, we ended up using silk sheets in Benjamin’s cot, as they were the only sheets that seemed to keep him calm.
Another issue people with autism suffer with is anxiety. Things must be just right to make them feel safe. If you are not verbal (a baby/toddler or even children or adults in some cases with autism) and you can’t explain what is making you anxious, then it can have a negative impact on your sleep.
People with autism can also struggle with producing enough melatonin, a hormone which aids sleep. This adds another dimension to sleep issues. Some parents after trial and error choose to put their children on hormone replacement therapy by giving them the melatonin that they lack.
Does it also affect naps?
Yes, it’s much the same with trying to get a child with autism to nap as it is with trying to get them to sleep at night. Although I have found that working on getting Benjamin to nap helped him sleep better at night.
How did you cope with night wakings?
In the end, we let him sleep in the bed with us once he woke up in the night. Looking back now, it probably made him feel more secure so he could relax enough to sleep.
What helped your son to sleep through, eventually?
Benjamin is six now, and we found he only got better at sleeping through the night when he could communicate to us in his own way. He needed us to know what made him feel safe and relaxed enough to sleep. He was non-verbal until nearly five, but now that he is verbal, although still significantly delayed for his age, we can tailor his night-time routine to his needs.
I would say to any parent, trust your instincts when it comes to your child and sleep
The night-time routine was huge. We had to follow every step so that Benjamin knew what to expect right down to the littlest detail. It has been worth it, as he is doing very well in sleep terms for a child with autism. For other parents with similar struggles, I suggest a picture routine with emphasis more on the activities that the actual time as some days takes longer than others.
How was it different with your second-born son?
When our second son was born Benjamin was four and a half. We were more confident as parents and understood at that time that children have different needs. I commented on one of your pieces on The Early Hour that we had no time to read the guidelines, so we just followed our instincts with Maximilian.
During the day Maximilian just fell into his own type of routine, napping three to four times a day in his first year. I breastfed him on demand and let him fall asleep at the boob, because, if it helped him sleep, then why not!? At night, I breastfed him to sleep in our bed and transferred him to the cot as he got older but the first few months we co-slept with him exclusively. (There are safe co-sleeping guidelines for any mums who are interested in this approach).
He is about to turn two and has a great sleep pattern with minimal effort from us – bar the first week or so when I weaned him off the breast.
Where at you at with sleep now?
Benjamin is six and half now. He is much more verbal than before and can tell me what is making him anxious or if something is too loud or bright or he doesn’t like the feel of his t-shirt. We follow the same routine to get him to bed at night as he thrives on it. Happily, we seem to get through the routine steps quicker and he’s a lot happier going to bed now.
He also sleeps through the night, which is great, but it’s still anywhere between 9-10pm before we get him down to sleep (on bad days, it’s 11pm!). I am hoping to get him to bed by 8.30pm now that the evenings are getting shorter and he’s back at school.
Any other sleep advice for other parents?
I would say to any parent, trust your instincts when it comes to your child and sleep. If a suggestion doesn’t seem to suit your child’s temperament, don’t force it, you will eventually find an approach that works.
To other parents who are concerned about their child’s sleep patterns and behaviours, don’t be like me and let people silence you. Find someone who will listen, be open-minded and keep reminding healthcare professionals of your struggles. Your child’s behaviour is not a reflection of your parenting skills or you as a person, they may have some real needs that need addressing, whatever that might be.
If you have a child with autism, does this experience resonate? Have you found that their sleep is affected?