I saw a picture of this sign the other day.
“Wow!” I thought. What an utterly useless and patronising sign. The person writing that is assuming that you haven’t tried to hold your breath under water before when swimming, and that you clearly don’t hold the intelligence to work out for yourself that it’s a sensible thing to do. Therefore you must be told. The simplicity and logic of the task of which they ask people got me thinking.
Each and every day I hear stories of “advice” and comments given to parents of children with autism. And some of them are absolutely gobsmacking. They can usually be broken down into two categories.
a) Advice from someone who means well but actually doesn’t understand the complications that autism can cause for a family.
b) Completely useless and unsubstantiated comments which cause nothing but hurt or disappointment, something no family dealing with autism needs.
Some of these comments and phrases are heard all too often, and some are just so outrageous I couldn’t quite believe them myself. So here are a few for you to browse.
I feel it’s important to mention here that I don’t write this as an attack on parents of neurotypical children who are supportive and helpful. To you parents I say thank you on behalf of the autism community. Many of us couldn’t endure everyday life without your support and compassion. Unfortunately though, not everyone is like you.
1. “They’ll grow out of it”. No, they won’t. Autism is not destined to improve with age. Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and experiences the world around them (National Autistic Society). So if you’re waiting for a child to suddenly spring into neurotypical life, stop wasting your time and learn to appreciate the incredible skills and unique talents that they already possess. For they are truly beautiful.
2. “They just need discipline”. This one is so common, and often highly debated. Every child needs boundaries to adhere within. That’s a given. It helps the child securely explore the world around them whilst remaining safe and happy. But what if a child has no understanding of consequences? No understanding of language? No understanding of why a certain behaviour or act will not be tolerated? How does “discipline” work then? As someone who has worked with children for 17 years I can firmly say that I believe certain expectations and levels of discipline are essential in preparing children for the adult world (and to keep them safe while they grow and develop). I can tell you now that when I realised discipline had no effect on the kiddo I was completely lost. Well, it had some effect, it sent him into catatonic meltdown. How do I parent this child?? None of the skills I have developed over the years are going to have any long lasting effects on him whatsoever. So what do you do? You do your best. To keep them safe, to help them learn about danger, and to show them you are in charge. Sometimes it may come across that you are “soft” on your child, as you aren’t forcing consequences on them. But what’s the point in forcing a consequence that will yield no result? That will result in no learning? Instead, safety has to be the main priority and if that means carrying your screaming bundle of joy to the swimming pool changing rooms as they won’t stop running on the treacherous and slippery side so you don’t end up in A&E (again), so be it. It may not be how you do it, but for some of us it’s all we have. Moving on.
3. “They’d be different after a few days living with me”. Yeah, ok. This I have to see. If you’ve understood anything I wrote in point 2, and you still want to give this a go, be my guest. You deserve everything you get.
4. “They just need a good night’s sleep”. Don’t we all. It’s a well known fact that people function considerably better after a well rested night where the brain is able to recharge and rebuild itself. Sleep deprivation issues are extremely common place for those on the spectrum. Many require medication to drift off to sleep due to poor levels of melatonin in their system and are unable to stay asleep for the course of a night, without waking up the entire house. This is not their fault. It’s a biological and sensory issue, which I won’t discuss in detail now. But be warned, if you should be brave enough to make this statement to an extremely sleep deprived and emotionally exhausted parent, you may not like the response you get…
5. “Oh well, we are all on the spectrum somewhere aren’t we”. No, we aren’t. Personally I don’t agree that the spectrum is a simple line with “severe” at one end and “high functioning” at the other. But if you look at the spectrum (linear or otherwise) you will see that no where is labelled as being “a neurotypical functioning adult/child”. By saying this to a parent you may think you are helping, making them feel included in society. But the reality is that you are downplaying the challenges they encounter and understating their situation, to the point they feel even more isolated and alone.
6. “Oh I’m sorry”. Now I know many people say this because they don’t know what else to say when they hear about a child’s diagnosis. You really don’t need to be sorry, our life has simply taken a different path. Yes there will be times where we need a shoulder to cry on, or a box of chocolates to land on our doorstep, but we love our children more than you can imagine. Whether your child has a disability or not, all parents feel like that sometimes. It’s a right of passage. So whether our child has broken a bone, or been told they must attend a specialist school, treat us the same. A bottle of wine wouldn’t go amiss for most I can tell you!
My last point doesn’t have a number and doesn’t belong in a list. When I was told about this I actually had to take a quiet moment to reflect. Said parent was enjoying a play date with a fellow mum. Her daughter, diagnosed as having autism, was age 5 and still wearing Nappies (extremely common for children on the spectrum, potty training comes later, if at all). The fellow mum asked “why did you have her if she is autistic?”. There are so many things wrong with this question I don’t know where to begin. Firstly, there is no test for Autism whilst you are pregnant. Research is ongoing as we still try and figure out what the causes might be and how the pathways in the brain are formed differently to most. Secondly, to make a decision to terminate a pregnancy due to your child having an increased possibility of disability in general is completely subjective to every couple and is a very private and personal decision. A question such as this makes it seem like it is an obvious and easy choice to terminate rather than experience a colourful and fulfilling life, simply from a different angle (I’m referring to autism only here, no other disability). If you’re interested in learning about this decision further I can fully recommend a documentary made by Sally Phillips, “A world without Down Syndrome” as it discusses the morality behind a designer population.
Before I leave you all for today there is just one last thing I want to point out. Many of us as parents have endured thoughtless and patronising remarks over the years. But we’ve heard some beautiful and positive ones too! I’d just like to take a moment to list them now…
“Despite the daily challenges you face as a family, he’s just so happy!”
“Your little man lights up any room he walks in with his quirky attitude to life”
“He has the best laugh!”
“I love it when your kids arrive at Messy Church. They’re always so alert and excited, looking for things to do.”
Keep these comments coming folks, they’re like a big cuddly bear hug to us somewhat fragile parents!
A huge thank you to the fabulous support group who helped me write this blog – thank you for sharing your personal stories with me, and for allowing me to tell the world what life for you can be like. It’s groups such as you that help us all along, giving support and advice in our darkest hours. And as I sign off from this blog I offer you all one piece of advice…
Do not breathe under water 😉
Thanks for reading,