TIPS, IDEAS & SUGGESTIONS FOR EXPLAINING AUTISM
(Disclaimer: This is MY personal story of explaining autism. I realize this is NOT everyone’s situation with, therefore, please do not take offense from my experiences with my autism personal stories)
How is Explaining Autism Funny?
Believe it or not, I have found the funny side of explaining autism! OF COURSE, autism is not funny, but individuals with autism are typically very, very sweet and if you let them, they will show their true very, very funny selves whenever possible!
As a grandparent raising an autistic grandson, I make it a point to look for humorous situations every day. Also, I’ve learned to find amusement in his behaviors instead of getting hung up or embarrassed by them.
Understanding and accepting my grandson’s autism has allowed me to appreciate his perspective on life and the world around us. And frankly, his perspective can be quite funny!!
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Raising a Child/Grandchild with Autism: Explaining Autism
Explaining Autism
For the most part, my grandson grew up without specific autism symptoms. Although he had some challenges as a young boy, he didn’t display typical signs of autism. He had also moved quite frequently, sometimes with Mom and Dad, sometimes just Mom, sometimes just Dad. So, his young life was a bit confusing and often a bit chaotic!
Fortunately, once he entered school, he had a routine and more structure in his daily life. At the beginning of his school days, he made friends easily and was outgoing. He began playing sports, and singing loudly at school concerts and enjoyed learning different activities.
Sadly, when I think back on those days, I can’t recall what or when things changed, but they did. He began to ignore directions from teachers and his parents. He was rude and harsh with his classmates. He didn’t care about being disciplined and sunk inward toward his technology.
His negative behaviors became aggressive, which prompted the school to seek professional support from counselors. At age 11 he was diagnosed with Autism Spectrum Disorder, and an IEP, Individualized Educational Plan, was developed to help guide him and his teacher through the educational years.
His diagnosis helped his parents and grandparents understand some of his behaviors, but we also knew he was a very capable child, who needed to learn and develop with a focused process.
Everyone, including the teaching staff, knew he had great potential and worked on supporting his educational and social development as much as possible. Which was what we’ve done. Unfortunately, his parents could not give him the stability he needed, which caused me to take legal custody when he was 12 years old. Since then, he has grown exponentially, with the help of educational and medical professionals……and stable home life!
To read about raising special needs kids, see Raising Specular Kids with Special Needs.
Explaining Autism with a Funny Autistic Kid
Explaining Autism
Ok, so how is explaining autism funny? Well, it’s because there are lots and lots of funny autistic kids. And, my grandson is one of them!
How so? Typically, sarcasm is not something autistic kids use or understand, but when they do, it’s hysterical! My grandson uses sarcasm like a comic, BUT other people don’t always understand his sarcasm.
And, my grandson is VERY bright. He is considered “high functioning”, (medical terminology for being on the autism spectrum and being capable!) but I think his functioning is his own choice!!
For example, he can watch a video, read an article, or hear something, and it’s usually imprinted in his brain…..IF he wants it to be. If he doesn’t care about it, it’s lost forever.
In school, he had the same counselor for FOUR years, FOUR years! If/when I referred to him, he’d say, “who is he” or “what’s he look like”? He refused to retain his counselor’s name. But, he could meet someone that interested him ONE time, and he would remember everything about him or her. Name, eye color, what they wore, etc. So again, his functioning is his choice!
When he thinks something is funny or silly, he thinks EVERYONE should think it’s funny…..even if it’s not! He’ll send short videos or texts to his aunts and uncles that he thinks are hilarious, but they don’t get it.
For some reason, the silliest, sometimes dumbest thing in the world will make him laugh for hours, while no one else can understand the humor! That’s funny! Even if it’s only funny for him, it’s funny!!
What are Common Signs of Autism? Explaining Autism
Explaining Autism
Parents typically notice signs of autism in their children at a young age. However, since each child can display a huge variety of characteristics, a clear diagnosis may take longer for some children than it does for others.
With that said, grandparents may notice some particular behaviors when visiting their grandchildren; while parents may observe other behaviors on an ongoing basis. Tracking your child’s specific activities is very helpful when providing information to medical professionals.
Autism Signs to Look Out For: Explaining Autism
- Lack of eye contact
- Negative reactions to small changes
- Showing communication delays
- Getting upset by loud noises
- Getting upset by bright lights or flashing lights
- Problems understanding emotions
- Relies on consistency and routines
- Stimming, rocking, and repeating
- Spending time alone
Lack of Eye Contact: Explaining Autism
When my five children were young, I always instructed them to look people in the eye while talking to them. I encouraged them to look at the color of their eyes, to ensure they were making eye contact during conversations.
Obviously, as a young mom, I thought looking people in the eye while talking to them was (is) a sign of respect. I also felt it demonstrated they were paying attention to what was being said…which I still believe is true for many people.
Now, while raising my autistic grandson, I realize how difficult it is for him to make eye contact or hold a gaze during conversations. Although my grandson is considered “high functioning” on the Autism Spectrum, most of the “signs of autism” apply to him.
Yet, with therapy and age, he focuses on his particular behaviors to attempt to improve his outcome. Therefore, when someone is talking to him, he works on trying to look at the color of their eyes. If only for a second or two, he is learning to hold eye contact with others, which is a big accomplishment for anyone with autism.
My grandson has also opted to grow his hair long, which can cover over his eyes if (when) he chooses. Oddly, his hair grows out more than it grows long, so it’s very fluffy! Lol! He LOVES it! I HATE it!
But, over the past few years, I’ve let him decide what he wants to do with his hair. I forced haircuts on him when he was younger, then he asked me if he could decide about his own hair. Hmmm! I thought that was a valid question.
I believe having long hair makes it easier for him to not make eye contact. But I always allowed my sons to make decisions about their haircuts, so it was time I allowed my grandson to make his own decision as well.
So, what did he decide? Not to cut it! THAT WAS (IS) QUITE FUNNY TO ME! He loves his long, fluffy hair for many reasons. One, because he hates haircuts, and two, because he can play with it, which is a soothing, “stimming” behavior, but I’ll discuss that point later.
Negative Reactions to Small Changes: Explaining Autism
Honestly, most children (and many adults) do not enjoy changes. This especially holds true for those with autism. Since processing information can be challenging to the autistic brain, changes, even small changes, can be confusing.
Truly, I think his reaction to changes is a bit different than others on the spectrum. Unfortunately, he had been subject to changes WAY too often throughout his young childhood.
He moved in and out of houses and apartments at least 10 times, before moving in with MomMom and PopPop. Sadly, I believe that his frequent moves created internal frustration, which caused a lack of connection and belonging.
Now, he has his own space. And, he feels very connected and secure in his space. However, he is still very resistant to change and needs to be encouraged to engage in activities outside of his comfort zone.
I feel making changes will be a continual struggle, but one we will strive for for a successful future.
Showing Communication Delays: Explaining Autism
It’s important to note that not all children show signs of communication delays. This is true for all signs of autism. Every child can display completely different signs than another child. That is why it is considered a spectrum!
Some autistic children may be very talkative or have no interest in communicating with others at all. Some nonverbal children may communicate through other means, such as sign language or the use of a communication board.
Occasionally, nonverbal children may learn to communicate verbally as they get older with the help of multiple therapies and other supports.
Other nonverbal children with autism may not use any means of communication or choose “home signs” or made-up signs to get their message across.
Again, every child and situation is different, therefore, parents and grandparents will need to learn the best form of communication for their family and their autistic children.
Getting Upset by Loud Noises: Explaining Autism
My grandson has never liked loud noises. For the average person, including parents, and grandparents, we don’t truly understand or consider what a loud noise is. But, over the years I’ve certainly learned what triggers him and what to stay away from.
Often parents and grandparents attempt to do fun activities with their autistic children, but it can be counterproductive. Here are some suggestions to keep in mind when you’re trying to plan an event with a child on the autism spectrum.
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Movie Theaters:
Movie theaters are REALLY loud. The volume in a movie theater may be too overwhelming for someone with autism.
Instead of going to a movie theater, consider staying home and having a quiet movie night in a cozy place in your home….or even outside.
Fireworks:
Honestly, fireworks are not for everyone. Although they may be pretty to look at, the loud explosions can be devastating for sound-sensitive individuals. Including those on the autism spectrum.
If you want to share the beauty of fireworks with your autistic child find opportunities online that will showcase the variety of colors, without the stifling blasts close by.
Balloons:
My usual go-to decorations are a large group of balloons. I give balloons as gifts, I use balloons for parties, and I celebrate with balloons.
But my grandson gets somewhat frightened of balloons. This was something I was unaware of until he was 12 years old. Due to the chance of balloons popping, which is his all-time worst sound, he doesn’t like having or being around balloons.
I believe the sudden and unexpected jolt of a balloon popping creates hidden anxiety he can not handle. Therefore, we are always conscious about when or if to have balloons for any of our parties.
Parades:
Many cities and towns celebrate holidays and various events with local parades. Most parades include a variety of activities such as bands, firetrucks, marchers, etc.
Although the excitement may be very high for most parade goers, the over-excitement and numerous sounds may be disturbing to an autistic child.
Crowded Restaurants:
Since my grandson spends most of his time at home, I try to take him out on weekends to walk around the mall or to grab a bite to eat.
However, I need to be careful when choosing a restaurant that is divided into different rooms or not busy. Why? Large restaurants or restaurants with one big room tend to be extremely loud. With the hustle and bustle of customers and restaurant staff, sound can easily escalate beyond a comfortable volume for my grandson.
Keeping that in mind, I am careful to choose an off time to go to a restaurant or choose a place that has multiple eating areas. Being mindful of those two things will make your meal time a much nicer experience all around!
Other Things that May be Noise Driven Are: Explaining Autism
- Sirens – police, fire trucks, or ambulance
- Trains – warning or sounding whistles
- Concerts – loud from crowds of people, music, and instruments
- Loud Music – this could be in an elevator, restaurant, car, or home
Getting Upset by Bright Lights or Flashing Lights: Explaining Autism
The same philosophy applies to bright or flashing lights that apply to loud noises, avoid them! During the holidays we often ride around the neighborhood to look at Christmas lights.
Most times he enjoys them, but if the house or decorated area has too many flashing lights or overwhelmingly bright lights, he chooses to stay in the car or look from afar.
Although bright lights may be pretty for some people, they can be extremely stimulating or overstimulating to kids on the autism spectrum.
Bright light situations may include theme parks (lots of noise there too!), arboretums (at night), theaters, casinos, etc. Again, fireworks that provide bright, flashing lights and loud noises may be an autistic child’s worst scenario. Be sure to avoid these types of situations as much as possible.
Understanding Emotions: Explaining Autism
Most children on the autism spectrum think of the world as very black and white. They generally don’t or can’t comprehend gray areas. For example, if you ask an autistic child a question such as, “Do you like my new haircut”? you will probably get a very direct and to-the-point answer without taking feelings or emotions into their response.
They are honest and direct with their response, even if it is negative. They might say, “no, I don’t like your new haircut” because they are being honest and not considering the other person’s feelings or emotions.
A non-autistic child may say something generic to not hurt feelings, such as, “Yes, it looks good”, even if they don’t feel that way. Their response is more reflective of the person asking the question and understanding the emotion they have rather than being 100% honest and hurting their feelings.
Emotions and feelings are tricky areas for autistic children, so it’s important to recognize this and remind your autistic child to consider other people’s emotions before responding.
This is certainly an area that can be learned as autistic children get older and figure out the cultural norms of society and others around them.
Relies on Consistency and Routines: Explaining Autism
Typically, those on the autism spectrum feel comfortable with consistency and routines. Making or learning changes can disrupt an autistic person’s flow and throw them off mentally, physically, and psychologically.
Of course, change is inevitable, so it’s important to discuss all changes before they occur and explain EXACTLY what will be different about the new process.
If the change is huge, such as moving homes, changing schools, divorce, or a family structure change, additional time for preparation and support may be needed.
By giving your autistic child advance notice to plan and organize their thoughts, you will ultimately allow them an opportunity to adjust to changes successfully.
Stimming, Rocking, and Repeating: Explaining Autism
What is Stimming?
Basically, “Stimming” is movement. When autistic children or individuals “stim” they may move their bodies, including hands and arms, in various movements. Some may shake their hands in rapid movement, while others may wave their entire arm or arms in a flapping motion.
My grandson’s stimming behaviors have changed over the years, however, his preferred stimming method is twirling his hair. When he was younger his hair was cut very short, so he pulled at his scalp, which resulted in bald spots.
As he’s aged, he chooses to keep his hair long, so he can twirl it. Currently, his hair is long, which he loves, so he enjoys fluffing it and playing with it, which needs to be controlled from time to time. Especially in public!
Stimming may seem to be irritating to others, but it is very soothing for someone with autism. Their movements are self-soothing opportunities to feel regulated within their own bodies.
Naturally, bodily movements are not always acceptable, such as church services, schools (especially in a mainstream environment), the workplace, etc. Often people stare at individuals who are stimming. Therefore, if possible, redirecting and reminding children who are stimming in a quiet environment may help them find other ways to self-soothe.
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Explaining autism can be challenging for children, parents, and grandparents. See these additional helpful tools for supporting Autism Toys & Accessories.
What is Rocking?
Rocking is another method of self-soothing. Like a mother rocks a young baby back and forth to relax, individuals on the autism spectrum also find rocking a calming and peaceful movement.
Often, when autistic children become upset or confused, they may rock their bodies back and forth to calm down. Again, rocking is a self-regulating tool that comforts and eases autistic individuals.
Self-regulating techniques such as stimming and rocking can be very beneficial in relieving anxiety and stress.
What is Repeating?
Many autistic individuals will repeat words, saying, or phrases. For reasons unknown to me, some individuals will hear something, and hang onto that something FOREVER! They will repeat whatever it is over and over and over again.
It could be just one word, a song lyric, or a saying. For me, and my family, repeating is the funniest trait of my grandson. He will choose the craziest phrase and say it every time you talk to him.
One year he heard the Christmas song with the lyrics, “heaven and nature sing”. He must have repeated that phrase for two or three months. We even found a poster that said that and hung it in his room. He thought it was hysterical…and it was!
Keep in mind that I am not laughing at or about my grandson or his autism because he is a FANTASTIC kid and his autism makes him who he is! He’s smart, funny, and lovable and he knows it!
Additionally, when my grandson learns about an illness or a diagnosis from school or commercials, he will straight-face inform someone that he has that disease. Is that funny?!?!? Sometimes it isn’t, but honestly most times it is!
For example, at the doctor’s office when the doctor asks how he is and he informs them he has osteoporosis. His doctor (who knows him well) and I fell on the floor laughing while he smirked the whole time watching us. That’s funny!
He knows that osteoporosis is a bone loss disease that generally affects older women, but he continued to tell anyone who asked how he was doing that he had it just to watch their expression! Now THAT’S a sense of humor!
Spending Time Alone: Explaining Autism
Spending time alone breaks my heart! Sadly, very sadly, my grandson does not have a friend group. When he was younger, he didn’t acclimate with other kids because of his autism.
As he got older, he was placed in a support classroom, but because he was very smart, he had all mainstream classes.
Although he did well in his class work and enjoyed being in mainstream classes, he didn’t quite “fit in” with the “regular” ed kids. He felt more comfortable in the support classroom, but was not challenged and became bored….which created negative behaviors.
Therefore, he continued to take mainstream classes in school but didn’t connect or make friends in either the mainstream or support classes.
As a younger boy, he was involved in a Social Enrichment Program. The social group played games together, learned to cook, and worked on independent living skills. But, when COVID hit, everything closed and he became more isolated, as did the rest of the world.
At that time, he remained at home and continued to connect with others through his computerized gaming system. He is an extremely talented gamer, which is wonderful. However, the only friends and connections he has have been through his computer.
Therapy sessions also closed during the pandemic and it was difficult to bond once sessions went online. So, other personal interactions were gone. For those on the autism spectrum or with any social issues, there were multiple challenges in sustaining relationships. This held true for my grandson as well.
Once COVID began to subside, he was not interested in pursuing one-on-one connections through Social Enrichment Programs or any other resource. He preferred and still prefers to be alone to interact with others only through his computer.
I hope that changes at some point soon and he has an opportunity to share his wonderful personality with others!
Explaining Autism
Honestly, no one is responsible for explaining autism to anyone. Even the funny side of autism. Autism does not need to be justified. Parents and grandparents need to understand they don’t need to continue explaining autism to feel their child is “acceptable” in one way or another. Your child is a special, unique individual for exactly who they are, regardless of any diagnosis!
Years ago, before my grandson was diagnosed, I recall referring to him as “quirky!” He was funny and VERY particular about certain things. As he aged and we learned he was on the autism spectrum his “quirks” began to make sense. His “quirks” were funny! His “quirks” are funny. I don’t have to explain his funniness to anyone. People either notice or they don’t!
Again, it is not my responsibility to continue explaining autism or justify my child’s behaviors to others. If my grandson feels the need to talk about it, he can. Yet, he should not ever feel required to do so to make someone else feel comfortable!
What I’ve realized is that many, many, MANY people are unique and quirky. And, many, many, MANY people are too on the autism spectrum, but they go undiagnosed. Meaning they go unlabeled and often unnoticed, which can be a blessing and a curse!
Fortunately, and it is fortunate, the medical profession has improved over the years, and children are now diagnosed on the autism spectrum much earlier. Early diagnosis allows children to get specialized support for their specific needs.
Some children may need support in place for a short period, while others may need support for the rest of their lives. Understanding and learning the values and benefits of autistic support and autism can help children lead happy, successful, and productive lives.
FOR ADDITIONAL INFORMATION FOR EXPLAINING AUTISM, GO TO AUTISM SPEAKS AT:
TIPS, IDEAS & SUGGESTIONS FOR EXPLAINING AUTISM
- Be aware that EVERY individual on the Autism Spectrum is different and unique. Therefore, when explaining autism, their personal autism symptoms will be different from others on the spectrum. DON’T COMPARE YOUR CHILD’S AUTISM SYMPTOMS TO ANOTHER CHILD.
- Find support services for your autistic child. Medical professionals, schools, and therapists can all provide information to obtain support services for children of all ages.
- Don’t get upset if an autistic child does not enjoy specific activities, such as movies, shows, concerts, public places, etc. These environments may be overstimulating for them.
- Do not feel you need to justify your child’s behaviors by explaining autism to others. Understanding needs to come from them, not only from you.
- ASK your autistic child what their preferred activity might be before making plans. It is important to include them in decision-making so they will not feel overwhelmed. (Side note: Keep in mind, even the BEST scheduled activities may not go as planned!)
- BE FLEXIBLE!!! A hayride or a trip to the mall may sound like a good idea, but something may trigger your autistic child that may negatively impact outcomes. Regardless of how hard you try, it may not be possible to avoid certain triggers out in the world. BE FLEXIBLE!
- Look for the humor and the funny side of autism! Often autistic humor is delivered with a serious straight face, but the message is meant to be funny! Don’t let the humor pass you by without noticing because you’ll miss a really good laugh with your autistic person!
- GET SUPPORT! There is support available for autistic children, parents, and grandparents. Don’t hold back looking and asking for support. Explaining autism is hard for parents. We ALL need some support!
