Time Out

Behind the Autism

When it comes to sensitive subjects, there are just things you shouldn’t say. Most are obvious but since becoming a parent, I’ve learned that common sense is not among everyone. Not only just becoming a parent but becoming a parent of a child with autism. Now of course I probably have certain things that bug me more than it bugs other parents in the autism community so feel free not to listen to everything I say. For instance, I don’t like when people label my son, Ayden-Jay (3), as autistic. “Oh the autistic one” or “the autistic child” are both phrases that bother me because he also has these gorgeous brown eyes and beautiful lashes and has the quirkiest sense of humor. Ayden’s smile is amazing and his dimples can make a grown woman swoon but people will still label him in a birthday party as the autistic one. Personally I say I have a child with autism rather than an autistic child, that way I’m not labeling him as well. But that’s my personal preference as his mother; I don’t believe it’s every parent in that autistic community feelings as well. When your child has special needs the best part of this storm is the community. You meet so many who can relate and so you don’t always feel so alone. I finally met a group of people who have heard the most ridiculous things as well when you inform someone your child has autism.


Top 10 Things NOT to say to me about my son.

  1. “He doesn’t look like he has autism.” Ugh, the hatred I have for people who tell me this. Now I don’t expect everyone to be an expert on everything because sometimes you ignore things if it doesn’t relate to you. It’s human nature. I feel like when people tell me this, it equates to the feeling of when a woman is asked about her pregnancy when in reality she just gained some weight. It’s never a good idea to assume. There is no LOOK to autism. I’ve honestly heard this line a million times (aka maybe like 15 times) and given the same response. “What the fuck are you talking about?” Now I’m a rude person with no filter but I won’t ever say “your kid doesn’t LOOK like they have (insert special needs)”. It’s just not something you say ever.
  2. “I’m sure you can make some time” or “There are other parents that can make the time for (insert activity).” Now, in no way am I putting down parents with kids who don’t have special needs. I know people can get a little butt hurt if they feel like their group is being excluded from situations or when their group is the “opposing” sides but please no one take this personal. Parents in general are busy freaking people. We have a million things to do and they only increase as the child gets older. Now for parents with children who have special needs, it’s a fucking obstacle. Do you know how much therapy is involved for a child with autism? My son has ABA (Applied Behavior Analysis) therapy, Occupational therapy, and Speech therapy. I know parents who have all of that PLUS feeding therapy and physical therapy for their child. Do you know how much time that is in our schedule? Most of being stay at home parents depending on our spouse or parent to support us while we bounce from therapy to therapy all day. Honestly, I rather sleep or catch up on household chores than go out after my kid is asleep. I rather eat the soggy Doritos that my kid keeps putting back in the bag after he licks off the cheese than drag him to a Starbucks that he doesn’t want to be in and face another tantrum consisting of head banging and the flinging of objects in public JUST to have a 30 minute coffee date with you. #sorryNOTsorry
  3. “Whelp, you shouldn’t have vaccinated them.” If I hear this damn sentence one more time my eyes are going to roll so hard, they’re going to fall out. We are tired of you Anti-Vaccine parents telling us that it’s our fault because we decided to go with our own views and think that vaccines are okay for OUR kids. If you don’t believe in vaccinating your kids, good, then don’t. That’s your decision. But do not act holier than thou and try to blame us for our children having autism because you read a bunch of articles from some invalid websites that BTW aren’t medical journals. I’ve gotten so many links to these articles in where all they say is “Scientist are investigating whether there is a link between vaccines and autism.” Do you know how many nights I’ve spent bawling my eyes out thinking that my son’s struggle with emotions, speech, and behavior is my fault? Do you know how long it took for me to convince myself it’s not my fault? Shit, I still don’t think I’m over it. For the parents looking for the perfect response for this line, I like to use something along the lines of “Fuck Off.”
  4. “My cousin’s husband’s best man’s uncle had a step brother with autism and he said….” I accept advice from other parents or people who closely grew up with someone with autism because there are different techniques for different children that might work for my child. I’m always interested in someone’s story. BUT I will not listen and cannot stand when someone tells me “I met this person who had a friend who has a kid with autism” and then that’s the end of the conversation. I think this is more of a social pet peeve but it’s always because they find out my kid as autism. Like how am I supposed to respond to that? Another mom told me that she hates it because it’s like you’re trying really hard to relate to the situation. A little too hard. We appreciate the effort, we really do but we hate the awkward silence. Most of all, you have the nerve to give advice. Not like you’re just trying to help advice but as a know-it-all advice. Again, not everyone, but other moms and I have encountered the snooty “perfect” parents plenty of times that we’re willing to include it on our list.
  5. “I don’t think its autism. Maybe something else?” The worst part of this phrase is that I hear it from people who don’t even have a degree in any medical field and has only heard of autism or seen the video’s on Facebook. My son was diagnosed a month before he turned two and you’re going to tell me, now that he’s three and a half, that this whole time, every professional was wrong. This whole assumption is based on what you, the person who has no degree or background in how the mind works, know? Thank you BUT no thank you. I happen to be okay with the diagnoses at this time.
  6. “You should listen to your pediatrician and not your gut.” I’m going to make this one plain and simple; my pediatrician told me Ayden was fine. He just had a speech delay. I took an assessment anyways and he referred me to a psychologist who said he just had a speech delay. I was then referred to the Early Intervention Program (Thank God) and their psychologist informed me that my son has Autism Spectrum Disorder. I’ve switched my child’s pediatrician five times. I’ve met mothers who have switched more. I trust a doctor who trusts my gut. A mother’s intuition is never wrong. Don’t ever forget that. That goes for every mother.
  7. “Every child is different. You’re just paranoid.” My mother, my step father, my son’s father, his mother, etc.; I heard it so many times from people I confided in. When my son was nine months and he wasn’t walking correctly in his walker (he was dragging a leg). When my son wouldn’t respond to his name or when he would bang his head on anything when he was excited, mad, or happy. My son whom hit every milestone early or on time until 9 months and now he stops? I questioned it all and expressed my concern but everyone just said that I was a first time mom and I was just paranoid. In reality, I was a first time mom and I was scared because I finally realized what mother’s intuition was and it didn’t only apply to when your child is lying to you. TRUST YOUR GUT AND SHUT EVERYONE ELSE OUT. Every child IS different but some are the type of different that needs help and that’s your job.
  8. “They’ll grow out of it and you wouldn’t even know they had it.” Can you guys believe I’ve heard that before? I still can’t believe I’ve heard it more than once. This is not something children “grow” out of. This is not a temporary behavior or a pair of shoes. Yes, with certain children on the spectrum they can have enough therapy where they won’t be placed in Special Education classes. That’s a blessing. But they did not grow out of it. They worked their asses off in a multitude of therapy classes to regulate their behaviors and to even be able to speak. It is not the same for every child and it is definitely not something you grow out of.
  9. “Well did they fall on their head or something?”*insert stale face* I’m not even going to explain this one.
  10. “He doesn’t act like the kids I see online” I need EVERYONE to read this. Autism is the shortened version of the whole diagnoses. Autism Spectrum Disorder. The keyword is Spectrum. This is where the “every child is different” phrase applies in the autism community. Some children are in the more aggressive area of the spectrum where they’re non-verbal, the tantrums are full out, completely anti-social, etc.; There’s the other end of the spectrum where the child could have minor tantrums, not respond to their name and can be semi-verbal. There are so many combinations of symptoms that no child IS the same nor should be treated the same.

Now I’m not saying to not say anything ever, to never place an opinion, or to act like autism doesn’t exist. I’m saying to please think about what you’re going to say before you say it. Be considerate of how someone might take things. Especially when it comes to special needs children and their parents.  If there are any other phrases that I forgot to list, please let me know in the comment section below. I love a good laugh. Again, this is all an opinion, I’m no expert.

 

If you have the funds or the time please check out www.autismspeaks.org to either contribute or learn about the Autism Community.

 

Twitter//Instagram//Snapchat-irrelephvnt

BTW this is my first parent post so be patient, there will be more.

5 thoughts on “Behind the Autism”

  1. I’ve heard every single one of these things. Most often I hear, he will grow out of it… He’s just a late bloomer. It’s hard to know what to respond but I try to remember that most of the time they mean well and are trying to comfort you. It’s hard but I’ve learned that sometimes it’s just from lack of awareness or experience unfortunately. I love what you wrote, very day to day in my household.

    Liked by 1 person

    1. Thank you so much. I think that keeping an open mind that not everyone is as educated in autism as we are has given me a lot of patience which is why I don’t respond to people the way that I want to, Lol. It’s just very frustrating

      Liked by 1 person

      1. Yes, agreed. I bite my tongue often when I’d love to go on but I have had to have patience and realize that I can’t do it all the time with everyone. It’s a struggle but I guess it comes with the territory.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s