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But. There ARE things that we hear, that are not helpful. I'm not sure if people think they're being kind, I imagine that most of them are. I'm not including all of them.
1. "But he doesn't look autistic". This is one of the most common. I would go so far as to estimate that a good 75% of families with children on the spectrum get this one. I've had it from family, from friends and believe it or not, from Doctors.
Please. Draw me a picture or show me a poster of what autism actually looks like? Because my goodness, it'd make life easier when searching for diagnosis in those early years. Forget about speech assessments, physio assessments, occupational therapy assessments and those pesky paediatricians. Nooo. We could just compare our chilren to a poster on a wall at the local GP's surgery. Like at Dreamworld. "If you're not as tall as THIS, you can't ride alone". If you look like THIS, you get a free pass into the Autism Spectrum.
2. "But he makes great eye contact!" Well yes. He does actually make reasonably good eye contact. When he's comfortable. And now, that we've been working on it for the last 3 years. But first of all, not all children on the spectrum avoid eye contact. And even though right now, he's looking happy and social, wait until he becomes uncomfortable. Wait until there is just a slight change in the air and he feels threatened, he feels a confrontation, so much as a hint that he's messed up. There isn't anything, anything you can do to make him look at your face.
3. "You just need to be harder on him." Actually, this was one of the ones that upset me most. The number of people who rolled their eyes at me when I tried to explain that I know him. I know when it's a 2 year old tantrum, and I know when it's him simply unable to process something or unable to handle the stimulation. I know the difference. And I will NOT punish the latter. So stop suggesting it. Do you think he can't hear you?
4. Oh, mine does that too, He went through a phase of lining up his cars. It's nothing. Yes. I do understand that a lot of children at some stage show some traits. It's not necessarily the traits themselves. It's the persistence of them. To the exclusion of anything else. If it's the only way he knows how to play with cars, and it has been for 4 years now, then it might be an issue. If the only thing he knows what to do with pencils is to grab a yellow, blue, purple and red one and call them Anthony, Murray, Greg and Jeff, then it's an issue. He's 4 and he is fixated. The (whatever the fixation is at the moment) is literally the first thing he thinks about in the morning, it is what he is talking about when he goes to bed at night and it is a cause of extreme distress when he doesn't have access. It's not the same as other children. Because it persists. For years.
5. But he loves other kids. He can't be autistic. He really does love them, you're right. That's what makes this so heartbreaking to me. Because he has no idea what to do with them. He couldn't tell you a single child's name. He can't tell you the name of his carer, and he's had her for a year. He's playing alongside them, not with them. He doesn't understand their games, their social rules, not even their taunts. He has no idea. He knows that he wants to be with them. But he's 9 and he still has no idea how to be with them. Or how to form a lasting friendship. He feels no differently about the child he just met at the park than he does his cousin. They're all on the same level of love to him. It's a LOT of love, but he loves the one he's with.
6. Oh. So he's like Rainman. Can he do anything cool? Can he work out math problems in a second? Is he a computer whiz? Listen, dumbass. My child is not a performing seal.
7. Do you wish you hadn't vaccinated him? Jenny McCarthy says that it's all caused by vaccinations. Ok. This is a tricky one. There has been no science to back up any link between autism and the MMR vaccination (particularly the vaccination schedule of the past decade). But I DO understand and sympathise with parents who feel that there is. At best, there is anecdotal evidence. Alexander met all of his milestones on time. He was talking, walking and perfectly fine the day before his 12 month shots. He changed almost overnight. He stopped talking, for a year and a half. I will admit, for a time there (before I'd heard about Jenny McFreakerson) that I wondered. I'd talked to so many people who made the same claims.
BUT. And it's a big but
8. If he's so afraid of XYZ, why don't you just medicate him? My next door neighbour's aunt's brother in law's cousin said that Rispedridone/SSRI's/Haloperidol/Ritalin fixed their child. Ok. I'm going to be careful with this one. Remember that the spectrum is wide and every child is different. I know that when Alexander was younger (his first 5 years) he had a few phobias. The worst were just after Sammy was born (so the change). He became deathly afraid of baths/sinks of water/swimming pools and Television/Radio/Cinemas and anywhere he could catch a glimpse of Shrek (formally his favourite movie). More than one person suggested that we simply drug him.
I know that in some cases, medication is the best option. For some children, it is a necessity. But in our case, we wanted to wait and see if we could just patiently, a little at a time help Alexander work through those things. It was rough. Sammy had I think less than a handful of baths in the baby bath. We showered him. We did the dishes when he was asleep. We stayed away from pools for a while. We stopped watching TV. But we also slowly worked him up to things. We explained that music would be on at the shopping centre, or television at a friend's home. That he didn't have to watch it if he didn't want to, but that he had to let other people do so. It took months and months, but we got there. He's had others since, but we've been fortunate enough that we are able to work through them.
That may not always be the case. Or, as he gets older (and a year ago we were seriously concerned), he may suffer from clinical depression. If that arises, it is something we will consider medication for, as we would for anyone.
So for some, it's an option. But don't throw it at me for convenience sake. Don't tell me to do it because it's the 'easiest' option. Parents who resort to using anti-depressants, anti psychotics and the like do so after serious, long consideration. It's not an easy out. Don't pretend it's not, and that we're just making life harder than we have to by not using it yet.
9. I don't know how you do it. I couldn't raise a special needs child. You know, you probably could. Because he's my child before he's anything else. He's my son before he is a child with autism. And I will openly admit, my life is easier than that of some of my friends who also have children with ASDs. There are parts of this that are hard. For us, between 12 months and 4 years were a hard slog with Alexander. It got easier, and it's been a bit harder again since about 7 years (he's 9 now). I imagine that in a couple of years, we'll be in a for a whole other kind of hard. And we're just starting with Sammy, so who knows what's in store. But don't make it sound like this is a huge burden. He's not. He's his own child, just like all of yours are. Yes, I have to parent him differently than you do yours. But we all parent our children (or should) according to their personalities and needs. There is no one size fits all. So we don't parent that way.
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10. We need to work for a cure. Another tricky one. My instinct is to shout you down and tell you to go to hell. I don't want a cure for Alexander. I don't want a single part of him to change. All of the things that make him him - I want them to stay. I don't want to take away any beautiful, eccentric, wonderful part of him.
I know other parents who are parenting children on the spectrum feel differently. Some children are not high functioning. Some are trapped in their own worlds and aren't able to communicate or build meaningful relationships. They will never live independently and for those parents there is heartache and despair - concern for what the future will hold for their children when they reach adulthood.
But don't assume. Don't assume every parent of a child with autism would wish it away. Let them guide you. Don't suggest that they would rather a different child, that they have been somehow cursed with an impossible burden. If they feel that way, that's fine. Let them own that. Let them feel however they feel. But don't suggest that they should if they don't.
These are my sons. At least one of them has autism. I would not change anything. I do not want a cure. I do not want to take away his autism. I just want you to let him be. Help him where he needs help, praise him where he deserves praise and accept that there is no one 'normal'. There is beauty in my child, just as there is in yours.
