The thing I worry about most in Michael’s future is his mental health. I know it is an issue for most children on the spectrum, and although he is a naturally happy child I worry that life will not be kind to him.
Recently I wrote about why I want to try sending my son to a mainstream school. I commented on the research that shows a child with autism is five times more likely to graduate from high school if they go to a mainstream school than in a special school. That those states in the US that have a preference for special schools, have a 20% graduation rate and those that prefer inclusion in mainstream have a 70% graduation rate, for students with disabilities. It’s a huge difference.
It got a big response – it is clearly a topic that concerns most parents. Some were positive and full of great stories about successful inclusion experiences. Many were not. And I understand why someone would go to a special school. I’ve heard about the experiences that many parents have in mainstream education. I get that this is hard and a special school may be the only way out.
The biggest concern for parents of children on the spectrum, especially if they are in mainstream schools, is their mental well-being. Sure, they say, maybe they’ll be able to graduate. But at what price? Will the school be able to handle their anxiety or depression? The bullying and hatred? These are all valid concerns, and I worry about them every day.
Mental illness affects one in five Australians and depression is the main cause of illness and disability for both boys and girls aged 10 to 19 years. People with autism spectrum disorder are more likely than other people to have a co morbid mental health difficulty such as depression and anxiety and oppositional defiant disorder. A recent survey in Queensland of young adults with ASD found that 47% were experiencing clinically significant mental health difficulties as compared with 7% in the general population.
But taking children out of mainstream school is not the only way to help with mental illness. Medication and professional help are always there too. And if you are like me and want to avoid medication as much as possible, here are some other techniques that may help to improve a child’s mental well-being.
First, Fix The Sleep
Like typical children, children on the spectrum require sleep and good food to help with health issues and general well-being. However many struggle – as many as 80% will have sleep issues.
Melatonin is very helpful here, as well as sleep training. I know sleep training is controversial. It has however helped our son go from waking up for three hours every night, to waking up for about ten minutes and getting himself back to sleep. And it took only three nights. He did cry – for about twenty-five minutes the first night, then ten, then five. I went in every ten minutes to give him water and make sure he wasn’t too hot or too cold. Braved the renewed tantrum that started every time I left. Now he calmly (well, sometimes with a bit of a whinge) lies down and drifts off to sleep after his bedtime routine.
Amaze have a great fact-sheet on sleep issues in individuals with autism that helped us and I recommend having a read of it if you are struggling with this problem.
Emphasise Communication and Problem Solving Skills
One of the biggest ‘fixes’ for mental illness issues in adults with autism is self-determination. A person with autism, just like any other, should be able to make choices that affect their quality of life. But in order to get to that stage they will have to have the appropriate skills. Problem-solving, reading, writing. Self-advocacy skills and communication skills are what will make a real difference in their lives. Yet these are also likely to be the things they struggle with the most.
It’s important that you don’t take this whole ‘self-determination’ thing too far when they are very young. No three year old wants to sit there learning how to communicate via pictures. They want to pull your hand, get you where they want you, and then whinge until you do what they want. So these goals are long-term goals. It just means that in my life with Michael I will always prioritise the skills that will eventually enable him to advocate for himself and be self aware. Then when he’s a teenager (or maybe younger) he will be able to use those skills to improve his own life.
Building Good Family Relationships Helps With Mental Health
I worry greatly about Michael’s future. But I never worry that he will be alone or unloved, because of how wonderful and supportive our families are. His last birthday party had 40 people. I know a supportive family isn’t something you can magically create. You can’t wave a wand and your obnoxious older brother suddenly starts visiting, or your nosy aunty stops sending you articles about camel’s milk. We have won the lottery a little in this regard.
But (as your grandmother can tell you) holding a family together is hard work. Keeping the family together during an autism diagnosis is harder still, because of the constant stress you and your partner are under. It’s very easy for either you, or someone in your family, to say something or do something that is so hurtful that your relationship may never recover.
I have written previously about how to deal with your family after an autism diagnosis. There’s no quick fix. I think education is the key – giving them good books to read, keeping them busy. If you’re worried they ‘do the wrong thing’, allow them to see the child only with you present for a few months so you can teach them what to do. Accept it if they want to keep their distance.
From talking to many autism parents, I would say their biggest challenge has been keeping their temper. And forgiveness. And isn’t that always the hardest thing in any relationship?
The Importance Of Exercise and Leisure Activities For Good Mental Health
Our little ones spend so much time working harder than anyone else – it is therefore up to us to make sure than when they have fun, they have FUN!! It is also important for children and adults, with or without autism, to lead active lifestyles.
I should add here that I personally hate all team sports. Loathe them with a passion. Yet I intend to encourage Michael to learn soccer or something similar (he has a great build for rugby!) and try to get him to be included in a local team. Even if he doesn’t like team sports, there are many other ways to stay active. Make sure we walk places. There’s swimming, gymnastics, athletics. The important thing is to find something physical that he enjoys, and encourage him to do it every day.
I make sure Michael goes to the park every day (weather-permitting). That even when we’re indoors we spend time just running around and engaging in lots of physical play. And of course I am always on the lookout for anything that he enjoys even slightly so that his leisure time is a lot of fun for him.
Make Sure Your School is Tough On Bullying
Let me say here that bullying is my biggest concern for Michael in my quest to have him in a mainstream school. It is the reason why so many families transfer to special schools. And it makes children miserable.
Bullying is, unfortunately, a fact of life for most kids whether on or off the spectrum. Whoever said that children are innocent little beings that don’t discriminate without being taught to do so by adults? This person has clearly never spent much time actually observing them. All research points to a natural tendency in children to separate when they play. They sort themselves by gender, age, and even race, once more than five are present at once. They can be completely ruthless with those they deem to be ‘different’, especially if they don’t understand the difference.
This dislike of difference seems to be a key part of human nature. But that doesn’t make it ok. A good teacher, a good school, will be able to handle bullying. They might explain autism to the children, they might make sure the other children are involved in your little one’s intervention. Or have other ways of including everyone. If they aren’t doing a good job, moving schools may be the only option.
Use Every Opportunity To Teach Resilience
The most important thing we can do with our children, on or off the spectrum, is to teach them to be resilient. This is more important than academic ability in predicting their long term success. Some of this, to be sure, may be built in. Some people are just naturally better at ‘bouncing back’ and at ‘trying over and over’ than others. But some of it can be encouraged and taught, as long as you are consistent in your approach from an early age. The important thing isn’t whether they are solving their maths problems, or getting A’s. The important thing is that they (and you) keep trying even if they are consistently getting bad results.
Your long-term well-being is linked to graduation, getting a job, and fitting in (to some extent) to society. Whether or not you think your child should have to ‘be normal’ or ‘fit in’ the fact is that to some extent they will have to. You cannot always do whatever you want in your life. Neither can your little one.
My job as a parent is not to make sure my child is happy all the time. If he needs to practise puzzles, I will start off easy. But I will, eventually, build up to the eight piece puzzle and I will not give him a reward until he has attempted it (he doesn’t have to be successful. Just has to try). If he cries because he doesn’t want to try and wants his reward immediately, I will teach him to manage his emotions. I have written previously on how I manage problem behaviour (no, it’s not just about ignoring it when they throw tantrums). By giving in to him and letting him do what he likes, I will not be doing him any favours in the long run.
As much as you can, model patience and resilience yourself
I know that it is hard to watch your kids fail over and over again at the simplest tasks. Being rested and emotionally ok yourself is the most important thing when handling difficult situations. When doing therapy with Michael, I think about the fact that it is much harder for my son to be going through this than for me. Then I take a deep breath, and show him again that the star shape doesn’t go into the ‘circle’ hole in the shape-sorter. I reward him for trying and carry on.
Autism parents and teachers have to be the most patient human beings on the planet. We can’t show frustration, we can’t lose our temper or tell them off for getting something really obvious and easy wrong.
As much as I can, I try to model the patience that I want Michael to exhibit. He has to do these things, that he finds incredibly difficult, every day for the rest of his life. The least I can do is be patient enough now, to help him learn what he can and put as much joy into his life as possible. And most importantly, prepare him to face the world on his own one day.