Tuesday, October 11, 2016

Dealing with the hurt when others don't understand autism

Autism is a spectrum disorder. It can take many shapes and forms. Many people in the general public expect people with autism to be like Rain Man, but that's simply not the case. My son is classified as high functioning autistic. He has come such a long way and he works so hard to keep himself pulled together. There are times, especially during times of transition or change that make it harder for me son to keep himself put together. Examples include: when we are on vacation, late start days, when he's picked up early from school, when myself or my husband are out of town, or when my husband has to work late. As you can see, my son typically struggles when there is a change. He thrives when he knows what to expect and he struggles when unexpected things occur.

We recently went to Hawaii on an almost three week vacation. My little guy did exceptionally well for the majority of the trip. There was an exception that occurred. We took a day trip to Hanauma Bay to go snorkeling. My son was so excited because he just knew that he was going to find a Dory fish from the movie Finding Dory. My little guy even went to the information center and asked the guides to locate a Dory fish in their books. After visiting the information center my son said that he was ready to put on his snorkeling gear and find his fish. We bought a snorkeling set prior to snorkeling so that my little guy could get accustomed to using the set. My son seemed excited but he began to struggle as soon as he entered the water. He hated the salt and the waves. In addition, he couldn't stand having the coral right below him. This caused him to immediately want to get out of the water. A meltdown began to ensue as soon as we got him out of the water and back to the beach. He screamed so loud and he just couldn't pull himself together. He typically can pull himself together in a matter of minutes, but on this day he just couldn't do it. I decided that it would be in the best interest of him to get him to a quiet environment to help him decompress. Another problem occurred as soon as I decided to take him back to the car. His meltdown began to get even bigger! He started to scream Dory, Dory, Dory... over and over again. He was so upset that he didn't end up finding Dory. I asked him if he wanted back in and that answer was a big No, but he was still so upset that he couldn't find his fish. He ended up screaming for the entire mile long hike up a huge hill back to the car. I got so many stares. In this moment, I really wasn't hurt, because I know that many people probably had no idea that my kiddo was in the midst of a meltdown. I did hurt for my son though, because there were a group of little girls his age that gawked at him. This broke my heart, because my son is cognitively aware to know when people are staring, but in this moment he could not pull himself out of this meltdown.

What hurts me is when others question my parenting tactics during a meltdown. I do not believe that you can truly understand how hard it is to help a child in these moments unless you have personally dealt with a meltdown. We often use an Ipad, music, and a quiet space to help my son decompress during a meltdown. We use these tactics because it helps my son relax and it also helps him keep his mind off of what caused the meltdown in the first place. We will also often use an Ipad before an event that we think may trigger a meltdown. We do this to help my son cope. Fortunately, we don't have to do this nearly as often as we did when he was younger. I often get tons of flack for letting me son use his Ipad. I hear things like: he should just be able to sit in a new place and behave without an Ipad, Why did you even buy your son an Ipad? Do you take that Ipad everywhere? Your son spends way too much time on that Ipad. I agree, that an Ipad should not be used all of the time. We do not let my son have it all of the time, because believe me, he would have it all of the time if we let him. We let him have the Ipad during times that could possibly be a meltdown trigger. With this being said, I have phased the Ipad out during these times, and the using an Ipad to avoid a meltdown has drastically decreased over the years. It just really hurts me when others judge and question my parenting tactics when they have no idea what we face.

My son has come so far and we have invested countless hours into therapy. We do everything that we possibly can for my son and it just really bothers me when people close to us question our parenting tactics without having lived a day in our life. I urge people to think before they speak. If you have a friend or family member that has a child diagnosed with autism or ADHD be less judgmental and more understanding. Ask questions before jumping to conclusions. Offer to help by babysitting or running your friend's child to therapy. A willingness to learn about autism will be so much more appreciated than a judgmental remark. This quote really resonated with me, "When dealing with critics always remember this...Critics judge things based on what is outside of their understanding." -Anonymous


  1. I also have a high functioning Autistic daughter. She is also a super hard worker and hates changes. Last Christmas we went to Disney World and she stunned me with how well she did...I was so proud. She also uses the IPad to calm down. She loves music... our children have so many things that bring them up or bring them down. No one will understand until they are in our shoes. All we can do is focus on the good and ignore the opinions. It is for the love of our child that we must block these opinions out. Read my blog post here: www.family-joys.com/my-katelyn-joy

  2. I totally understand, I have a 14 year old who is also high functional. Is his first year in High School and he is having the hardest time with the transcition. Also when we go out we still get stares from people specially teenagers who laugh because he's either covering his ears o talking to himself. Sometimes I just want to scream at everyone, specially those who tell me "He looks normal"