I am so TIRED. Exhausted, yes, but I’m also tired of hearing certain things from people. Why others feel the need to comment on situations they know nothing about, I don’t know. In many cases I expect they are trying to be helpful, but at this point I don’t know how long I can manage that fake smile and “yea…” when someone says something a long the lines of “well all kids do that..” or “He/she doesn’t look Autistic,” or “I think it’s just a phase..” or my all time favorite “give him to me for a week, I’ll set him straight.” That one in particular is neither helpful or well meant. If someone says that they are automatically labeled an asshole in my book and not worth my time. It is an insult, plain and simple.
Let me let you in on a little secret, parents of kids without special needs, when we mention our kids “issues” it is not comparable to your situation. And that may sound petty or mean, but it is the truth. While your child might run around when excited, or throw a tantrum when upset, yours will tire out at some point and the tantrums probably stop at a reasonable moment. Special needs, namely, Autism parents may not know what that is like. Sure, our kids are just like yours in many ways, albeit behind in some ways, and just as bright. But our kids also have sensory issues, speech delays, MELTDOWNS oh my god the meltdowns.. among other things. They have their tantrums too, be sure of it. But I can guarantee you that you have no idea what a meltdown really is if you don’t have a child on the Autism Spectrum. More often than not, kiddos on the spectrum come as a package deal, by package deal I mean not only Autism but an alphabet soup of other conditions. For example, my ten year old is ASD (Autism Spectrum Disorder) ADHD (Attention Deficit Hyperactive Disorder) and Severe Anxiety. And I’d wager that most Autism parents have a kiddo with at least two, if not more, conditions.
Not only are the kiddos drowning in this alphabet soup, but they are also having to go to therapies, get treatments, more testing and more therapies and more testing throughout their entire existence. The parents of these kids are exhausted and barely standing on their own two feet at any given moment (so if they show you any sort of patience be counted as lucky, because most of the time our patience is used up on our kids, none left for you). They are scared. They are worried about what may happen to their kids if anything should ever happen to them. They cry when they think no one can hear them because they don’t know if their children will grow up to be functional adults. Functional not only in society but also with the simple tasks like dressing themselves, personal hygiene, keeping their house clean or even maybe one day have kids of their own, to name a few. These are every day fears for the Autism parent. Every. Single. Day.
But on the opposite side of that coin, milestones. The most amazing things. When a child on the spectrum reaches a milestone, learns a certain behavior or can sit through a hair cut or starts talking after years of silence, or eats anything other than the one food they’ve only eaten for friggin ever. No milestone is small, they are ALL big achievements. Things that you take for granted with your kids, an Autism parent loses their mind with joy when their child can suddenly start using the potty, put their clothes on, brush their teeth by themselves… stuff like that. It is a constant battle with these amazing little kids, but when all the work finally pays off the reward is so awesome that I’m willing to bet some (if not all) parents will burst with tears of joy.
When parents who have no idea make the comments that you just shouldn’t say to an Autism parent, I try to remind myself that they mean well and they really think that is the right thing to say (most of the time). I would like to address a few of those comments, because I have heard them recently.
“All kids do that…” I’m willing to bet that this one is meant as a way to console someone who is talking about their child on the spectrum. But it has the opposite affect, it downplays the importance of a symptom of Autism.. When you say it you might as well add, “so it isn’t as important as you think it is,” or “it’s not a big deal, you are focusing too much on that one thing..” But I can tell you from experience, we don’t dream this shit up. The scenario most others are probably thinking of is something their kid does, which is normal behavior to them… because it goes away. But whatever you think the similarities are, an autism parent isn’t talking about what you consider to be hyper, or a tantrum, or picky eating… with us it is to the extreme. To the point that a meltdown usually occurs if the child becomes over stimulated by these things. Take what your kids do, any quirk or “bad behavior” and multiply it by a hundred, and you might have some idea.
“It’s just a phase,” or “They’ll grow out of it.” No, no they wont. Autism never goes away and it is certainly not a phase. These Autistic kids will one day be Autistic adults. Whatever obstacles a child on the spectrum faces, it reaches well into adulthood. Sensory issues for example, remain, they don’t go away. As adults they may handle a situation better from years of practice, but they deal with these struggles every day for the rest of their lives.
“You should discipline your child, they are spoiled.” Usually this is said as a result of witnessing a meltdown. A meltdown is something a child cannot control, it is a physical reaction to over stimulation. It is not the same thing as a tantrum, which is a child wanting a certain thing or reaction out of the parent. During a meltdown the child wont respond to anything, usually, at least not in a positive way. A tantrum can be stopped by giving them what they want or discipline, a meltdown cannot. An autism parent does discipline their child, they have at least tried every single form of discipline once. With some asd kids, discipline has no affect, and only positive reinforcement does. It depends on the child, really. But telling an Autism parent they are spoiling their kids shows you have no idea what they are dealing with. Absolutely no idea. Often times a child on the spectrum does receive a lot of leniency on a lot of things that other parents wouldn’t afford their kids. Again, this is a pick your battles situation. For example, a parent may decide to let their kid jump on the bed because that particular child has a thing about bouncing, probably it’s a stim (repetitive movement that helps regulate stress; flapping hands, spinning, bouncing, chewing, etc.).
“He/she doesn’t look Autistic.” Or some other form of it which includes “but he/she looks normal.” I think in many special needs houses “normal” can be a dirty word. It is offensive. Just think about it. But to the former, of course the child doesn’t look Autistic… Autism doesn’t have any distinguishable physical trait. Most of the time you cannot tell someone is Autistic unless they tell you they are. Many have learned behaviors or ways to hide their quirks from others to help them in social situations. Unless you spend a lot of time with someone you wouldn’t notice it.
“Give him/her to me for a week, I’ll straighten them out.” I don’t consider this one to have any well meaning behind it. It is basically you saying you are a better parent than I am. And all I can think is that you would be abusing my kid. It then makes my idea of you become something less than nice. This is an ignorant statement, to say the least, and once said, it cannot be taken back. It is offensive and just shouldn’t be said. This is you basically acting better than me. Shut up.
Autism is not caused by bad parenting. It is also not a “designer diagnosis” and neither is ADHD for that matter. Trust me when I say that getting a diagnosis is not easy. There is testing and talking to a ton of different doctors and shrinks. Then starts the therapy and treatments and meetings upon meetings. The crap we deal with from the schools they attend is enough to make you pull your hair out. These kids are not bad. They are not spoiled. They are not broken.
And for the love of all things holy, do NOT apologize when you are told that they have a child with Autism. Autism is not a disease. It is not something we want you to feel sorry for. People with ASD are just that, people. If someone tells you they have autism or their child does, they are not doing so to gain your sympathy, they are doing so to explain to you why they are behaving in a certain manner. When someone tells you “My child is Autistic,” or “I’m Autistic,” don’t respond with “Oh I’m sorry,” the better response would be acknowledgement and acceptance. If you have questions, reasonable ones, then ask. If you aren’t sure what it means to have autism, ask. Anyone who has Autism in their life is more than willing to explain it to you.
Personally, I love to talk about it. I like explaining it to people. I think that the more people know the better the world will be. Acceptance is key. That is all anyone with Autism really wants, to be accepted by those around them and treated like a person. Yes, it is difficult, but you can help by being understanding. It lightens the load a little bit to have someone to talk to.
An Autism parent doesn’t need your advice. We get enough advice from the schools and the doctors and the therapists. If you want to help, help by being there as a shoulder to lean on or an ear to listen, help by being a friend. Help by understanding.
Side note: It took me four hours to write this. I had to leave the computer many times to attend to the kiddos. And then at one point I hit the wrong button and lost all my work, which almost resulted in a freak out, then I found it again, phew.