If you do not know what I mean by #NotAll-ing: When an autistic posts something about what allistics do, it goes without saying that not all do it, but many do, so responding with “not all allistics do that, so don’t lump us in” is basically like a man saying “not all men” on a post about rape (just an example, Im not comparing autism to rape, or allistics to rapists, relax). Yes we get it, not all allistics (non autistics) treat us (autistics) like shit, but oh so many do and that is why these things need to be said.
When you say things like #NotAll so and so about the thing, you are essentially belittling the thing talked about, or seemingly trying to make the thing not so important. The thing being talked about matters to the people talking about it, whatever that thing might be. And to be perfectly frank (and maybe even rude) about it– if you aren’t actually Autistic you don’t really have a right to tell an autistic person that such a thing never happens, because that particular autistic very likely has seen that thing happen or it has happened to them. Autistics are beginning to speak for themselves, and much of which is through social media, because not all are verbal and typing online is a handy way to get their “voices” out there. But it is met with a lot of negativity from parents of autistic kids, which is always astonishing to me, because these are people that should be more understanding than someone who does not have autism in their lives. But they get offended, sometimes, and rather easily. Do I really have to say that not all parents of Autistic kids yadda yadda? Well just in case, there it was.
Many many arguments and misunderstandings happen online within Autism groups, often between autistic and non autistic parents of autistic kids. I think a lot of this has to do with the fact that autistics tend to word things more bluntly and the non autistics read it with a tone that simply isnt there. And there is also this misconception that if one is able to type coherent sentences online then that person is too “high functioning” and “not autistic enough” to have a valid opinion. People that hold that statement to be true have no friggin idea what that specific individual might have suffered through or overcame in their lifetime. Maybe it took years to find their particular form of communication, and then with a simple phrase it is belittled and all that hard work becomes diminished by some stranger on the internet. This is how *some* allistics like to silence autistic adults. The very autistic that you might be arguing with may have been nonverbal, or they slammed their head into things during meltdowns, or they might have chewed on their hands until they bled at some point or maybe they even still do. You. Don’t. Know.
Using the term high functioning can belittle the struggles of an autistic. Using the term low functioning can belittle that particular autistic in a way that people assume they have no strengths. I hate the functioning labels to be perfectly honest. Personally, I fluctuate. There are days where I get shit done. There are also days where I cannot function. There are many days where I am in between, sort of functioning but not really. It will vary depending on stress, anxiety, sensory issues, and anything else really… I guess my point is that no matter where we are on the spectrum we ALL have our struggles and our strengths, just at different levels and they vary from day to day. And that is if you don’t count comorbids. Don’t even get me started on the damn comorbids. Okay maybe Ill say a little. When people talk about hating autism, most things they are thinking about are the comorbids. So it would be nice if people would recognize that. If you do not know what I mean by comorbids those are other conditions that autistics may have as well like ADHD or Anxiety, or SPD, or Epilepsy, etc.
So often, when an autistic tries to give their opinion on something that disagrees with a non autistic person it is met with such animosity and defensiveness. Then when the autistic tries to explain that they didn’t mean it however it was taken they are tone policed, told that they should be more polite while stating their opinion, etc. This gives the message that the non autistic’s feelings are more important than the opinion of an autistic person who actually lives through what that person’s child lives through (on some level). And yes, not all autistics are the same, we say that when non autistics try to fit us all into a box, however we all have to fit certain criteria to be autistic, so don’t you think that maybe there will be similarities among us?
Those of us that do take the time to try to offer our advice or opinions in a group or forum do so because we can relate on some level and most likely because we care about our fellow autistics so much that we want others to understand it from our perspective. Being autistic makes it where when we see things talking about autistics it is personal to some degree. We see ourselves as kids when we read posts by parents talking about their children, because we were once children too, dealing with very similar scenarios. So when this happens it is difficult to not get a bit passionate and pushy when trying to get our opinions across. I ask that if any of you non autistics do tend to try to silence autistics (online or in real life) to maybe consider all of which I have stated above. Autistics are the ones with communication issues, so to tell us to say things differently, in my opinion, is quite an insult, especially if it took a very long time and a shit load of hard work to be able to say what we do.
And before anyone says “you don’t speak for all autistics”, I know that. But I’m willing to bet that many other autistics will agree with what I have said.
Please also keep in mind that your autistic child will grow up to be an autistic adult. How would you want people to treat them? Would you find it acceptable for others to speak to your child the way that you speak to autistic adults? If not, then maybe it’s time to take a long hard look at the way you conduct yourself.
To Those Who Don’t Have Autistic Kids….
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.