Regular readers will know that my eldest daughter Polly was diagnosed with high functioning autism in June 2015. You can read more about our diagnosis here if you like. To say that we’ve been on a steep learning curve ever since would be the understatement of the century. As it’s world autism awareness day, I thought I’d share some of the things that have helped us, as a family, come to terms with the wonderful world of autism. Hope you find this article useful.
Love, acceptance and early intervention
It should go without saying that unconditional love is at the foundation of my family. Even through the tears, fights and explosions, we love each other fiercely, and that counts for a lot. If I’m completely honest, I had a deep gut feeling that Polly was autistic years ago, but fearing the great unknown, was completely in denial about it. By the time she was diagnosed, I had already done a lot of accepting, and grieving for the life we wouldn’t have.
I don’t view Polly’s diagnosis as a label, far from it. I see it as a necessary part of getting her as much help as she needs, as quickly as possible. Without knowing that she is autistic, hubby and I might not have taken the stance to home educate her. Without the diagnosis, we probably wouldn’t be as forgiving of her anger or meltdowns, because we wouldn’t understand what drives it. I’ve written before about meltdown triggers. Knowing what we’re up against means that we can either avoid potentially difficult situations, or prepare for them in advance to relieve some of the stress and anxiety for our girl.
Children with high functioning autism often appear to be just the same as everyone else their age. Girls in particular are exceptionally good at masking their difficulties in public. They’re not the same though, they need more understanding and support than most other kids, and the earlier you can intervene the better. Although it’s nice to say that the world will just have to accept our kids as they are, I don’t think this will prepare them particularly well for adulthood. They will have to be independent one day, and our job as parents is to equip them as best we can with the tools they need to navigate the minefields in their way and thrive.
Polly looks for near constant reassurance – from her family, friends and anyone else she comes into contact with. I’m starting to see that a lot of her sadness comes from her feeling like she isn’t getting it, or isn’t getting enough of it.
Good sleep hygiene
At the time of diagnosis, Polly was waking up ten times throughout the night as standard. I’m not quite sure how we managed to survive those days to be honest, looking back it doesn’t seem possible. We invested a lot of effort in getting our girl to sleep better. No one thing was a magic bullet, but creating a bedtime routine and sticking to it like glue has really helped us.
We always have TV or a film during dinner time, because it keeps the kids at the table and focused on their food. That goes off at least one hour before we walk upstairs. During that hour we have quiet time: Lego, reading, drawing, colouring. Excitement is kept as close to zero as possible. When we go upstairs we read, and have meditative sleep stories running while the children are dropping off. This whole process is of course significantly easier when my husband is around. When he isn’t, I improvise, but stick to the routine as best I can.
When Polly was still waking multiple times every night, we would silently guide her back to bed, via the toilet if she needed it. We were advised to not interact with her at all if she woke during the night. This took about a week to start noticing a difference, and was a tremendous positive for us. Polly sometimes sleeps through these days, and if she wakes it’s usually only once to go to the loo.
However, during times of heightened anxiety she finds sleeping very difficult. Also some nights she sleeps all the way through but wakes up looking like someone dragged her through a hedge backwards. She fidgets a lot, and we suspect that her quality of sleep is pretty poor. It’s a far cry from two years ago though, and if nothing else, I’m very grateful that the middle of the night meltdowns are behind us.
Children need their sleep, it’s as simple as that. We knew that we only had capacity to deal with one thing at a time, so poured all our energies into this arena directly after diagnosis, and I’m glad we did.
Some basic do’s and don’ts that I live by
Don’t waste time fretting about the future. This is so much easier said than done, and parents will always worry about their kids. However there is a line to be drawn somewhere. I came across a great quote recently which made me think about this in a different light. ‘Worry is interest paid on a debt you might never have.’
Don’t promise something you aren’t intending to deliver on. Our biggest meltdowns come from Polly thinking a certain situation will go one way, but it ending up going another way. If she doesn’t have time to process the change, it sends her world into chaos.
Don’t threaten a punishment, but do give an immediate consequence if certain behaviours warrant one. As soon as something becomes grey, it causes problems for us. We had to work super hard to help Polly understand that her violent behaviour towards her brother and sister was unacceptable. The way we did this was by issuing an immediate consequence if she caused them physical harm. You can read more about it here if you like.
Don’t get too hung up on what you think your child(ren) ‘should’ be doing. It is said that comparison is the thief of joy, and when it comes to swapping notes about kids I would 100% agree. By comparing our own children, or our kids towards others, we are doing them a massive disservice. We are all different, and should be treated individually.
Do give your kids a loving push. As the amazing Temple Grandin says, we should never stop giving our kids on the spectrum a loving push. Gently easing them out of their comfort zone is a great thing, because they will need to live in this complicated overwhelming world without us one day.
Do encourage a physical activity. Polly did gymnastics lessons for two years, which helped immensely with core strength and slight hyper mobility. When it became clear, towards the end, that she wasn’t enjoying it very much we knew we needed to find her something different. She now goes to jui-jitsu, and it’s doing her just as much good as gym class did. There are certain obstacles that come up, such as not enjoying standing in front of everyone during grading, but overall she’s really enjoying it. There’s a lot to be said for feeling the fear and doing it anyway.
Kids on the spectrum often greatly benefit from sensory toys and activities. We make the following easily accessible for our children to play with whenever they want to.
Play dough: No introduction necessary. Click here for my super easy no bake recipe, which will save you a fortune over the years.
Play foam: This brilliant sensory toy is thousands of teeny tiny Styrofoam balls connected together with a non-toxic glue like substance. The kids can pinch it, twist it, pull it apart and fiddle with it until their hearts are content. Play foam was instrumental in helping Polly to stop pinching her brother and sister.
Kinetic sand: Polly loves to bake, but some times it’s just not practical. We might not have ingredients, or we might already have a full cake tin from yesterday’s efforts in the kitchen. At times like this, kinetic sand comes in particularly handy. It never dries out, doesn’t smell and doesn’t create as much mess as play dough.
Lego: This timeless classic is a must in any house and makes a wonderful family activity. I love watching my kids use their imaginations, and problem solving skills when they’re building their masterpieces. Lego is also great for the development of fine motor skills. Our box of Lego gets played with every single day.
Home made play slime (video recipe below)
When Polly was two and a half, she was diagnosed with a huge list of food allergies. We put her on a strict exclusion diet, and after a few years most of them are thankfully now a thing of the past. The one that has stuck has always been the worst offender: corn, which comes in many guises. In fact there are almost one hundred corn derived ingredients that are often given scientific sounding names. Corn is exceptionally cheap to produce, and high fructose corn syrup (HFCS) is sweeter than table sugar. Can you see where I’m going with this?
HFCS is sneaked into so much processed food, that it made not cooking from scratch near on impossible for us. It was a huge chore at first, but I now see it as a blessing in disguise. It opened my eyes to how much rubbish, especially the sugary variety, is in most pre-made food. Nowadays I wouldn’t feed it to Polly if you paid me, because it makes her bounce off the walls. Don’t get me wrong my kids aren’t totally deprived of sweet things. They eat plenty of home made treats, made out of real ingredients such as nuts and dried fruit.
I know there is much said about putting autistic children on a gluten free, dairy free diet but unless you are making the food yourself, I’m not sure how much benefit you’d see. The trouble with processed GF/DF foods is that they are often loaded with unnecessary ingredients. Don’t be seduced by fads, and always do plenty of your own research. I would personally advocate cooking more food from scratch if you aren’t cooking much at the moment. I know it can feel like an impossible task, and trust me I’m no stranger to fussy eaters. Small baby steps are the only way to make a long term difference. Start out with easy wins, have a look at my healthy treats Pinterest board if you’re in need of inspiration.
This clever girl made a very tasty chocolate cake, all by herself this afternoon. She also spent over an hour riding the bike she has been terrified of all winter, because it’s a bit big. Her maturity and fierce independence blows my mind away. She’s growing up, and she makes me proud every single day 💖
Some of the books that have helped us (google them to learn more)
Autism… What Does it Mean to Me? by Catherine Faherty
Today I Feel Silly and Other Moods that Make my Day by Jamie Lee Curtis
Ellie Bean the Drama Queen: How Ellie Learned to Keep Calm and Not Overreact by Jennie Harding
The Huge Bag of Worries by Virgina Ironside and Frank Rodgers
All Cats Have Aspergers Syndrome by Kathy Hoopmann
Love Bombing by Oliver James
The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross. W. Greene
Ultimately, high functioning autism is a journey for the entire family. Wishing you the best of luck on yours ❤️