10 Things Autism Parents Want You To Know
1. The use of the 'R word' and High Functioning/Low Functioning.
This should go without saying. The use of the 'R word' is both outdated and offensive. Too commonly it's used as a term to demean another person. My least favorite question to be asked is, "Is she low functioning or high functioning?". Guys, it's never okay to label a person by how 'able' someone is. The spectrum is so vastly diverse, either way you look at it saying this is diminishing to a person's struggles or under estimating a person's abilities.
2. We celebrate the small victories.
Hearing your child's first words, watching your child try a new food, and potty training, are all to be expected from your average neuro-typical child. These are things most parents don't think twice about. When you have a child on the spectrum, you might have to fight for years for a few words- if any. Some of us will never hear our child say, "I love you." or "Good night." It's hard. People one the spectrum deal with sensory sensitives of all kinds. Something as simple as trying a new food can be extremely overwhelming and feel damn near impossible. Things like learning to use a straw or zipping up jacket may seem like a small feat, but in reality these “small victories” are the things we as parents live for.
3. Non-verbal does NOT mean stupid.
The inability to speak is not a direct reflection of someone's intellect. People are quick to assume that a nonspeaking person is 'low functioning'. 25%-30% of people on the spectrum are non-verbal. There are so many ways someone who is non verbal can communicate and express themselves. Things like body language, eye contact, tone, stimming, and facial expression are all ways someone can use to express how they're feeling. Sign language is popular for children and adults, writing, typing, apps on electronic devices, and social stories are great forms of communication. If all else fails- try a smile, the universal way to show kindness. People often wonder if someone doesn't say 'I love you', then how do you receive it? Hugs are great, but can be limited. What it comes down to is affection is shown in many forms. My daughter's favorite way to show affection is through pressing up against me. Or anyone she likes in fact. She does this with her feet, her body, her head, pretty much anyway she can find a way. So if my child is sitting dangerously close to you and begins to push. She's not being aggressive she likes you.
4. I am an unapologetic helicopter mom.
Please don't tell me to, "Relax! and to come sit down. Your child will be fine." I'm sorry my child has a tendency to wander, has zero fear of falling, and doesn’t understand the imminent danger of a moving vehicle. While everything may appear seemingly under control, I know at any minute that can change. This means I have to be on high alert at all times.
5. What do we want? Sleep!
Being a parent is hard work. Being a special needs parent requires more. Most parents are excited for the day when their LO starts to sleep through the night. For some this day seems like it'll never come. Problems sleeping are normal for those on the spectrum. Unfortunately, so is wandering. As a parent you always have to keep one eye open and at times getting up through out the night, and keep doors locked. While not every person has these concerns its better safe than sorry.
6. Autism does not have a look.
Telling me my child doesn’t look autistic is NOT a compliment. I will say this, I understand that when someone says this, they think they are actually complimenting you. They think they’ve found a nice way to say that your child doesn't look like they ‘disabled’ . Autism does not have a ‘look’. It’s a neurological disorder. Please don't undermined a person's Autism by claiming they seem 'normal' the ten minutes you've been around them. This diminishes a person's struggle. And it’s just plain rude.
7. Stop staring a silently judging. It's more obvious you're doing it than you think.
Stop and think before you start to pass judgment on the child sitting on the floor of the grocery store, having what appears to be a temper tantrum. Or you're out to eat with your family and spot a child being disruptive and rocking back and forth. How likely is it that you're actually seeing a child have a meltdown (NOT to be confused with a tantrum.)? Or that your baring witness to a child having a sensory overload? The answer is- Very likely. This is hurtful for the parent and especially the child. It’s hard enough trying to gently guide our child back to a level of comfort and to have people silently casting judgment on you and your child. My child is not bad, or defiant. They’re simply having a hard time. Every day we must be the buffer for our children, in hopes of avoiding meltdowns and overwhelming situations. Everyday we are doing the best we can just as you are. Instead offer a helping a hand, or even just a smile. Please keep all head shakes and peircing stares to yourself, thank you!
8. Children With Autism become adults with Autism.
There is no cure for Autism, but early intervention and various therapies can provide astounding success. These services are vital for our children as well as adults within the Autism community. At 21 a person 'ages out' of these state programs. What's next? Most people on the spectrum do not live independently. Where do these people go? Without programs these skills they've spent years acquiring can begin to fade. Regression is real. The worst part is what happens to my child when I no longer can care for them? Who will care for my child when I’m gone? Some will end up in residential programs that promise to cater to their individual needs. While some end up in a facility. So why is awareness and acceptance important? Autism is a life long disorder. My child will one day be an adult, and I one day will not be here to be her buffer from all things chaotic. These are the concerns we as special needs families must face. I hope everyday that one day the world will be more accepting and understanding place.
9. There is no set age for toilet training.
Often times we may find ourselves catching someone noticing our child is not potty trained, and that’s followed by some unsolicited advice on how they are old enough to use the bathroom on their own. This is really frustrating. I can't tell you how many times someone suggested this or that, when they fully didn't understand the situation for what it was. Whether it’s a fear, a sensory reason, painful, or they geuniely need assistance, whatever the reason may be, telling someone their child is too old to not be potty trained is rude.
10. Acceptance over awareness.
Awareness is great and all, but simply knowing someone exists isn’t enough. Not to mention ‘awareness’ has created many misconceptions about autism and the people affected by it. For one, society has created this small neat little box that has this perception of a ‘one size fits all’ concept of autism. When in reality the many of those fall short of the expectations. People see autism as two major extremes. Either they assume you have some amazing ability and are a genius, or you’re non verbal and extremely disabled. This is hurtful because the majority of those on the spectrum fall in the middle of these two extremes. Some talk, some don’t. Some have major sensory issues, while others not so much. Some autistics have other co existing conditions like epilepsy, and GI issues, while others don’t. Some are intellectually disabled, while others aren’t. There is a reason it’s called a spectrum. No two people on the spectrum are a like, and to make the assumption that they are is hurtful for the individual as well as the autism community as a whole.