It is with profound sadness that we inform you of the sudden passing of Suzi Shaw, the author of this post. Suzi was an exceptional teacher and mental health advocate, whose unwavering dedication to supporting those with additional needs and mental health illnesses touched the lives of countless individuals throughout her career. Her loving husband, three children, and two rescue dogs mourn her loss deeply. Suzi’s legacy of kindness, empathy, and tireless community service will continue to inspire and impact the lives of those she touched. She will be sorely missed by all who had the privilege of knowing her.
April 2 is the United Nation sanctioned Autism Awareness Day that is celebrated every year. This year’s theme is Transforming the narrative: Contributions at home, at work, in the arts and in policymaking. This year the YLT Blog is bringing a guest blog from a parent of children with the diagnosis of ASD. She offers her perspective on how teachers and schools can make her children’s lives more manageable. As an educator myself, I have learned a lot from reading her thoughts and I can’t wait to implement some of these ideas to strengthen the partnership between school and home. Happy reading! (The Editor)
ASD and my children
It can be really hard parenting young people who fall under the umbrella of having a diagnosis of Autistic Spectrum Disorder. There are so many stigmas around having a child who is Autistic – some I’ve heard are that it’s an excuse for “bad behaviour,” that the parents “give in too quickly,” that the child is “just rude.” The pointing and staring if things are leading to meltdowns make you want to stay in and hide from the world. I’m lucky, I have a lot of experience with people of all ages who are on the spectrum and whilst I find this behaviour offensive I’ve found ways to work around it – such as picking a particular supermarket because their lighting is better and the aisles are wider, or going to a particular library because the staff have got to know my children and are able to help choose books suitable and within their interests and give me 5 minutes to sit and breathe.
My now 22 year old son (has finished his degree in Law and is now completing his masters in Law) has friends, a girlfriend, plays in a couple of bands and is wearing jeans, t-shirts and has long hair and, up until recently, a beard! This was the child who knew everything, who had a reading age far beyond his years and who only had 1 friend at a time, who never broke the rules and who had some of the most amazing obsessions/special interests such as the Titanic, Dinosaurs, Pokemon, Star Wars, Electric Guitars, Video Games, Drums, Bass Guitars, and Fountain Pens! He was very confused when we had to break the news to him that he couldn’t collect one of every single lightsaber as they weren’t made… He also wore his school uniform or a suit more often than not as that was his comfort zone. However intelligent he is, when he was younger he didn’t realise that when he was hot he could take off his jumper in school. Intelligent, but needing the obvious spelled out.
We’ve had to fight very hard to get a diagnosis for our youngest, because they are genetically female. It’s been hard to educate people that girls mask their difficulties throughout their lives and they build coping strategies quicker than boys. They are just about to finish their A Levels and are looking to go to university in September. They are brilliant; they are an artist and a scientist – two things I am very definitely not! They identify with they/them pronouns and have a few very close friends.
It can be a lonely place when your life is easier when it is run with very strict routines. There are things I’ve learnt along the way, especially with respect to teachers and within education. I’m sharing these as I hope that they will help you to help the young people you are working with – and their parents.
- Meltdowns are not “bad behaviour.”
Meltdowns are not my child “being difficult” or “badly behaved.” It’s them not being able to cope with what they are being presented with. This might be that the particular paper they needed isn’t available, or that the chair they normally sit on isn’t right, or that the lighting is causing difficulties. A meltdown is them trying to communicate that they are struggling with some kind of overstimulation and they can’t concentrate with it as it is.
- No two young people have the same triggers and soothing mechanisms.
Just because you know that loud noises are a trigger for one student within the ASD umbrella, it does not mean that all students will find these hard – in fact some revel in them and creating them.
One of my children has to wear ear defenders. They also “stim” (do repetitive movements/actions to help self soothe) when they are struggling. These may be obvious such as the use of fiddle objects (springs, zip bracelets, feeling of a hair band on their wrist, drawing) or something less healthy such as picking at skin around fingers or pulling out hair.
- Home is home and school is school.
It’s really hard for some people to understand, but often what happens at school happens there, and what happens at home is for there. This makes things like homework really difficult because it falls in-between those really clear boundaries. It also means that it’s almost impossible to find out what my child is doing at school, or if there is anything that I need to be told as the two don’t mix! Also it means that letters/information is not reliably passed between home and school. It helps if I could be told that there is a letter in front of my child to remind them to pass it to me.
- Routine is key.
Before school, during school, after school all have their own routines. When these get changed, it’s so difficult. The unknown, the unfamiliar is far too hard and can easily lead to a full on meltdown. If something has changed at home then it may lead them to a more distressed state at school, but if it’s happened at school then my child could easily explode when they get in from school.
I wish teachers had asked my child how they like to be referred to. Not just as he/she/they, but also do they use the terminology of Asperger’s, High/Low Functioning Autism, an Aspie, someone with ASD or an ASD student. It makes a difference. If you don’t know – ask! Especially when they get to secondary/teenage years, giving them the power over their own diagnosis and identity is so important. It’s equally important to explore this with the rest of the class in an age appropriate manner.
- My child has empathy, can be social, can be a great asset.
There are those who do and who do not manage to be social, who struggle with eye contact etc., but really so many young people are discounted because of their diagnosis. It’s almost a list of the things they “can’t” or “shouldn’t be able” to do – which sets them up to fail before they start. My children can be really sympathetic and whilst the way they show it might be different to our other child who doesn’t have an ASD diagnosis, they definitely do show that they care and that they want to be there for someone who is hurting or needs help to celebrate. Just watch and see, don’t immediately discount them.
- My child is capable of so much with the right support.
My child, like every child, has the ability to reach their potential if they have the right support. My eldest was an amazing reader at a young age, he can also spell and use English grammar in the most perfect way. He needed to be allowed to pick books that he was able to read, not having to be on the reading scheme attached to his age.
My youngest? Their special talent is in art. Their drawings are amazing, they can sit and doodle, even more so when things are feeling a bit out of control and it helps them to focus. They need a different kind of support. They need space, time, and for someone to just sit with them. Often that’s enough. Take an interest in what they are doing and don’t assume that because they are drawing during your lessons they aren’t listening! They, if like my youngest, need to have something to focus on whilst you are talking, and will take in more if they are allowed to doodle.
- Challenge Accepted!
If things change then please give them time to adjust! I know this isn’t always possible, but if it can be, please do it! Change is a huge thing in the lives of my two children and my husband. It’s the biggest trigger for issues. If you are using a timetable in front of them and something has changed then mark it out so they can see it. Spend time telling them it’s changed – you will know what kind of level it needs to be!
- Talk to me!
I’m their Mum, I’ve been learning the right, and the very wrong things to do to help my child. If I send you a letter/email at the beginning of term telling you what triggers they have and what kind of things help please read it! It will make your life and mine so much easier and it will have the greatest impact on my child(ren). I don’t want to sound smug, but I am the greatest asset you have access to. I am the biggest expert on my child. Please, please, please be in regular contact and I will be to you too. This only works if we are all working together for the good of my child(ren). Home/school link books are so useful – I can let you know anything that is going on at home and you can let me know how things have gone today during lessons.
I hope some of this has been helpful, and I know that you all have the best interests of my child(ren) at heart, and that is the most important thing. There isn’t just “one size fits all” and you and I will make huge mistakes, but if we work together then things will work out.