Karen is a guest contributor to The Aspergian. She and her son Scott create videos on YouTube about autism and school. The Aspergian invited her to contribute an article since we were so impressed with their YouTube work, showing one autistic boy’s first-hand experiences, in the hopes that making his story public will educate people and lead to progress. Their YouTube channel is Scotty P and Me.
Welcome to my little window of the world. I live in a little country called New Zealand. I am a mother of four children, my youngest son Scott is the focus of this article. Scott is diagnosed with Autism, ADHD, and dyspraxia. He got his diagnosis at the age of 9, and he is now 12. I’m trying very hard to keep to topic as we have had a long and hard road to where we are today and most of the issues have been around the education system. Looking at the topic of this article I could easily write a book about the trials and horrific experiences both Scott and we as parents have been through.
The pure lack of knowledge and understanding of Autism has been the catalyst for teachers treating Scott with utter disrespect, neglect, and abuse. I am a teacher myself, and my husband is a manager in the health and disability sector. We have walked away from many meetings scratching our heads at the utter ignorance and inflexibility in attitudes and practices.
From the first year at school, teachers would comment on his unusual behaviours, his inability to sit still, to be apart of the group situations, and his ongoing misbehaviours and defiance. In short, the teachers saw a boy who looked normal on the outside… he likes to please the teachers at times and is compliant to a point. But then all of the sudden, he starts ‘acting up,’ rolling on the floor, lying on the floor refusing to move, and sometimes he screams and cries.
Teachers see this as bad behaviour and think he is being defiant, and that’s how they labelled him. Add to that poor Scott had issues with incontinence for many years at school, and teachers just didn’t care enough to help him with it. They wouldn’t remind him to go to the toilet, and then later scorn him for having an accident.
It’s not a part of my job description to help children change into fresh clothes was what I was told one day when I collected Scott at the end of day in wet and soiled clothes with a huge rash because he had been like that for hours. I learnt pretty quickly to become my son’s advocate and the mama bear came out.
Being a teacher myself, if I didn’t change a nappy, it was called neglect and against a child’s basic human rights, I quickly barked back. We would spend a lot of time out of our own private time making meeting after meeting with teachers about Scott’s issues.
It all seemed quite an obvious problem to us, but the teachers seemed to be clueless as to why they were seeing such “bad behaviour.” As they described these behaviours, I would point out the connection around the fact he had to write things down. Due to his dyspraxia, Scott found it hard to write in a legible manner, on top of him already finding it hard to put his ideas down due to autism.
He actually has an amazing imagination and is capable of telling amazing stories orally. The meltdowns, the crying, screaming, and outbursts were all centered around him having to write. It took us, the parents, to pinpoint and look for the triggers in the behaviour, and point out what can they do to overcome the obstacles.
Scott became more and more disillusioned as he would do a project, and he would have incredible evidence but he would be marked severely for his writing, which actually had nothing to do with the content of what they were after. His disillusionment lead to him thinking the teacher hated him and he was quickly labelled the naughty boy, who if he only tried harder would be better.
He would be forced to write in the belief that all the practice would make him better. You can imagine due to all this the amount of meltdowns and shutdowns Scott had, which in turn led to him being bullied by his peers.
We moved Scott’s schools a few times in hope they would take a better approach. As parents, we learnt to talk to the school first to see what their attitudes were about children with extra needs. Luckily, Scott has always had a great attitude towards life, but even he found it hard to shake off the old attitudes of teachers.
It was when we finally got a diagnosis that we found that we were taken a little bit more seriously. The school was a bit more open to getting him some more support like using an iPad instead of writing with a pen, and even having the assistance of a teacher’s aide.
The worst treatment Scott got from teachers was usually around them having inflexible ideas and strategies for dealing with him. Using physical force to take him out of the class for not complying with teachers’ instructions was an extreme reaction and actually added fuel to the fire.
I found a lot of teachers had the attitude that they were right, and it was their way or the highway. Instead of taking the time to understand that there was a reason behind Scott’s behaviour, all they needed to do was take time to get to know him and see how he ticks.
In my sector of early childhood education, our curriculum is based on the fact that every single child is unique and has his or her own strengths and interests. Education is based on interests, and it is all about knowing each and every child. The primary school sector seems to be locked into this one-size-fits-all approach to education, and if your child doesn’t fit, they are placed into the too-hard box.
This has given me the drive to educate these teachers about autism and how they can adapt their practice accordingly. I have done presentations to teachers, teacher aides, and health professionals. Scott and I have been inspired to go further in educating the public on autism and have a YouTube channel talking about what autism is and how it affects people.
Scott is now in an amazing school and has excelled from day one. He has not had one meltdown and is truly accepted for who he is. He is a totally different boy and is in a good place in understanding himself and is passionate about helping others. He wants to share his sorry so no one has to go through what he has. Let’s hope that we can make a change for others out there.
- Challenges and discrimination for autistic children in school - November 11, 2018
5 Responses
This is powerful, and really gives a good insight into what it’s like for autistic kids in school. I was a teacher for 13 years, and this is making me think back to all the times I told kids they needed to try harder. I’m cringing at myself, because maybe they couldn’t have tried harder, or trying harder was making them miserable.
I love this! I worked alongside Karen for 2 years as a Teacher, She has helped me through an ASD diagnosis for my daughter now 6 yrs – and is a huge advocate for children in the community struggling in the school setting. Teachers need to pull their heads in when it comes to understanding ASD and spectrum disorders, there is such a stigma that every child with ASD is non verbal, hand flapping and rocking. each child is different, though their symtpoms and traits meet the DSM 5 critera for spectrum diagnosis. I have had many meetings and discussions with my daughters teacher this year to help her school and class room enviroment and I am lucky her teacher is wonderful! – Chloe is now able to self regualte her anxitey with weighted blankets, headphones and visual cue cards, meltdowns are few and far between although happen at home a lot. 🙂
I’ve been a teacher for 32 years. I am also autistic but was not diagnosed until I was 55.
Six years ago, the school I’m currently assigned to had an autism teacher who worked with autistic students. District budget cuts eliminated this teacher’s position and autistic children are now lumped together in classes with other special education children. I wish things could be otherwise since I can’t imagine being in a room with children who may be emotionally disturbed and violent or disruptive. That would be stressful for anyone.
I agree that there needs to be more teacher awareness about autism.
I cried when I read this. It could have been written about my own son. That line about appearing normal on the outside….that hit home too hard. And the physical abuse. I live in Canada and I continually shake my head after school meetings (which I have to push hard for). These people, many with special needs professional designation, seem so woefully ignorant about autism and more stubborn than 2 yo hell bent on getting his/her own way. My son is doing better now, but it takes all my will not to yell at these people, because all the positive change is from his efforts and mine against a tide of authority figures who don’t know how to lead/teach, only control, by any means necessary (pharmacological, physical and mental abuse). In many ways, he’s vastly more resilient than any 9 year old should be. Trying to move past it, but some things are just unforgiveable. Teachers and schools act like they are sacrosanct and behave sanctimoniously towards us parents, especially if we advocate for our children, vulnerable as they are.
I really appretiated this article. The only thing I would really change is using “their” instead of “he/she” since it is more inclusive, and also aligns well within the research that MANY autistic people turn out to be gender-queer. (Aka, outside of just using she/her or he/him–outside the traditional binary.).
But other than that, this is great. I really am glad your son is doing so much better and that you are able and willing to put out the messages necessary to educate people on autism. I say this as a high-masking autistic adult women still fighting for a diagnosis. It’s very difficult, again, because of the stigma and stereotypes about autism that so many “professionals” still have.
So thank you, I know people like you would have made my life a lot easier growing up, and even though I can’t relive those years with that help, I really hope this makes things better for the younger generations. They deserve it.