We have two boys with autism and as a ‘Special Needs Parent’ we hear a lot of things and there are some things we simply do not want to hear. I know there are lots of lists like this out there, but I thought I’d share what I’ve actually heard myself and why I don’t want to hear it.
1. “He/she doesn’t look autistic.”
Really? What is he/she supposed to look like? Autism doesn’t have a “look”. He might look “normal” to you but it doesn’t mean it’s not there.
2. “It could have been worse.”
Yes, it can always be worse. I have a lot of things to be grateful for in life, as do you, but autism is hard for everyone living with it and that statement is really patronising.
3. “But I’m sure you wouldn’t want him any other way!”
This is a tricky one. I love that my eyes have opened up to a whole other world, that I get to raise autism awareness and that society is becoming increasingly more accepting of autism. Everyone is equal and should be treated as such, disability or not. But in the end, this is MY child and I want what is best for him just like any other parent.
Would you say this to a parent who had a child in a wheelchair? I love my children for all they are, but if I could take away their autism I would, in a heartbeat. If I could take away their struggles and pain, I would.
4. “Will it get better as he gets older?”
Better? Can he learn to adapt around our neurotypical society you mean? In some ways yes. But you have to understand that every step of the way is work, really hard work. For him and for us.
5. “I heard that autism can be cured by cutting out dairy and gluten. Maybe you should just cut those out?”
First of all, its not as simple as it sounds. Yes, I’ve heard about this too. Just because we’re not doing it doesn’t mean we don’t know about it. There is no proof that it works. Some studies showed that some autistic traits in some children can decrease by excluding dairy and gluten, but this is usually in children who already have digestive issues. Mine don’t. I’ve tried twice (within the space of a few years) to cut out dairy and gluten from my boys diets. It is really hard, time consuming, expensive and it didn’t work. Which leads me to no 6
6. “He’ll eat when he’s hungry”.
No, he won’t. My boys will not eat if they don’t like the food. When they lost weight and were risking malnourishment I pulled the breaks and decided that nutritious whole foods (as much as possible) were better than them living of gluten free toast with jam. Because that’s pretty much all they would eat. They didn’t like hardly any of the gluten/dairy free stuff, and No, it didn’t matter if I made it myself. They did not eat my gluten free bread, or meatballs, or fish fingers. Even if I did my best to make it look like the original. My boys are picky eaters on the best of days.
7. “My child used to do that…” (insert…)play with baby toys, recite whole movies, hit or kick strange children, not have friends, have a meltdown in a shop, not answering when spoken too…the list goes on and on.
Did they? Mine still do.
8.” Do you think it was the vaccines?”
No, I don’t. The vaccine theory has been disproved over and over and still people refuse to accept that!
9. “What’s his special interest?”
Not all children on the spectrum have a special interest or obsession, just like a neurotypical child can also have a special interest.
Joshua does have an obsession with trains and lifts, but Harry has several interests that vary, but not one that he talks about 24/7 like Joshua can about his. Being autistic doesn’t have to mean you have one.
10. “I know all about autism. I have a … (insert appropriate; neighbour, cousin, student…) who is autistic”.
The first rule of Fight Club… I mean “Autism Club” is: If you’ve met one person with autism you’ve met ONE person with autism.
The second rule of “Autism Club” is: If you’ve met one person with autism you’ve met ONE person with autism!
All joking a side, this is something we talk about a lot.
Every one is different, that includes people with autism. They are all individuals and none are the same. Yes, they obviously have some things in common but it’s called a “spectrum” for a reason. Two people with autism will not have the exact same traits or react in identical ways to input. Just look at my two. They are really different. They have autism in common but are still individuals.
11. “We are all on the autistic spectrum more or less.”
This really gets under my skin. No, we are NOT all on the spectrum. Like I said in no 10; we are all different, autistic or not, but autism is a neurodevelopmental disorder. It’s a whole other processing system.
I understand that you love talking about your (neurotypical) children, but sometimes you might not realise that some things kind of stings, because these are things I don’t get to experience with my own. I’m not saying you can’t talk about your kids, just be aware of this.
So here are
3 Things that sting when we hear.
1. “It so much work taking my kids to all their activities.”
I understand it’s hard work driving your kids around. But I would love for my children to have their own social life and hobbies.
2. “I never see my kids, they are always out playing with their friends.”
Your child is building his/her independence which is normal for a growing child. Again, I would love it if my boys had friends to hang out with. Independently.
3. Moaning when your kids want your attention or talking to much TO you.
I would give my right arm to have a proper conversation with my boys. One where I don’t have to fight for every word that comes out of them, or when the conversation is on mutual terms, not just being bombarded with facts about trains.
So there you have it. I welcome any comments or questions.