What Exactly Is Autism?

I get asked this question a lot....and I'm so happy when people ask me. It is an opportunity to share with others our experience as well as help spread awareness & understanding. Recently, I was asked this question by a friend from high school via Facebook. He said he was looking on the Internet & finding a lot of information with technical terms....not to mention a vast variety of information.

Well, here is what I have been taught.....in a nutshell. Every person with autism is different. It shows up differently in each person. This is because it is a brain disorder. The brain of an autistic person is LITERALLY wired differently than the "typical" brain. So they receive & process information in a different way. What causes it? They still don't know, but they now think that it happens during development in the womb & is related to genetics.


So, how do you know? Basically, autism shows up in THREE areas. If your child is exhibiting traits in only one or two areas, they DO NOT have autism....it MUST be ALL THREE AREAS. AND IT MUST BE A CERTAIN PERCENTAGE IN EACH AREA. Basically, it must happen/occur a lot of the time. Here is a list of the 3 areas & how they show up in our Ethan.

1. Speech - A person with autism will have snags in their speech development. Some may never speak, some may say only a few words, and some may have non-functional speech. Ethan falls into the last of these. Non-functional speech means that he is ABLE to speak & talk, but has difficulty communicating with his words. This is why speech therapy is SOOOOO important! Our Ethan doesn't understand the back & forth of a conversation. Over the last year, he has progressed a TON! Because of his hard work in speech therapy, he is now able to express his wants/needs with his words, able to answer questions with a definite answer (what color is the grass? Are you hungry?), and in the last few weeks.....actual non-scripted/spontaneous conversations have been emerging!!! Non-scripted means we haven't given him his words to say....he is coming up with the words on his own. (Examples of scripted would be like, "Thank you. You're welcome.") YEAH! More about that later this week....

2. Social Behavior - The second trait of autism is delays in social behavior. Lack of eye contact, wanting to play on their own, and being unable to function typically in social settings are examples of delayed social interaction. Ethan struggles very much in this area. Again, because of hard work, Ethan is okay with other kids playing NEXT to him.....although he would still prefer to play alone. For so long, he would wig out if any other child came NEAR him. But NOW he is able to sit next to kids during eating times & play next to kids during playtime. We are still working on sharing our toys & playing WITH kids...but progress is being made & we are so excited!

3. "Odd" behaviors - The last area is to look for strange behaviors. Rocking, spinning, flapping, not sleeping, picky eater, repetitive behaviors and lining up toys seem to be the most common behaviors in this field. Ethan exhibits constant chewing, not sleeping, picky eater, repetitive behaviors, lining up toys. However, there are some more subtle ones as well. For Ethan, we learned of 2 subtle behaviors during his diagnosis clinic. They showed up that Ethan only uses one hand when completing tasks. I had never noticed that before, but he did! For example, eating a bowl of cereal......he will use his spoon with one hand & the bowl moves all over the table....because he doesn't use his other hand to stabilize the bowl. Same thing for pulling up & down his pants.....he only uses one hand. Occupational therapy has been helping in this area as well! But think of the basic skills that you use two hands for....putting on socks & shoes, going to the bathroom, opening things, zipping, buttoning, snapping, etc. These are all difficult for Ethan because he only uses one hand. But it is getting better with practice. Another behavior that we never noticed was that Ethan plays with his toys at eye level. If his cars are on the floor, he is laying on the floor so his cars are at his eye level. If something isn't at his eye level, he will pull it to his eye....TV, computer, flash cards, toys, etc. His vision is fine, it's just something he does, but we never noticed it before. But apparently these traits are common as well.

This is a great visual aid for autism behaviors!

So, that is autism in a nutshell. Usually anxiety is the underlying cause/reason for these behaviors. The world is very scary to Ethan.....people, animals, sounds, automobiles, stores, the environment....it's all changing & non-constant. Not knowing what to expect is almost paralyzing. So, we help him to take in the world a little at a time and teach him skills that will help him navigate through the scary/overwhelming environments. Our Ethan also has Sensory Processing Disorder which makes things that much more complicated. But we are soooo blessed to have a variety of talented & knowledgeable people helping us & Ethan learn & understand how to work through these challenges. He is doing so well, and I truly believe that his future is going to be so much better because of the work he is doing now! GO ETHAN!

If you still have questions about Autism Spectrum Disorder, please check out the links on this blog. They are very helpful!

Organized Mom, Organized Son

A lot of autism I don't understand, so I am continually trying to learn all I can about it in order to be a better mom to Ethan. But there is one part that I understand 100%.....his need to organize. I get that better than any other concept because I have that deep seeded need to organize as well. When I am stressed, I pick up my house, reorganize a closet or rearrange furniture. This need to keep order & all things in order.....I get it.

Here are a few pictures of things that Ethan has recently organized....and I'm such a proud mama! :0)

These are actually puzzle pieces that he has organized in alphabetical order all on his own. I discovered it when we were cleaning up the toys for the evening.

All of Ethan's Cars & Cars 2 cars...nicely organized.

This may look like a mess, but it is several board games that he has organized ALL over the living room.

I even found a few pictures from when Ethan was younger (not quite 2 years old), and he was organizing items then as well.

All of the blocks were in the square holder before Ethan began to play. He took them out, one at a time, and lined them up next to him at the desk.

Here, Ethan is finding & organizing....um...well....nature.

Lining up rocks & other outdoor treasures.

Ethan is more interested in lining up nature than seeing the apes at the zoo...even though they are super close to us!

Light It Up Blue - April 2nd, 2012

This week, Ethan & I will be decorating my home with lots of green for the next holiday, St. Patrick's Day. But, soon after that, our house will be participating in Light It Up Blue! Check out the video below, and find out how you can help spread autism awareness by Lighting It Up Blue. And if you are a member of my family...be looking for your "blue" basket in the next couple of weeks....complete with a blue light bulb.

Thank You PBS.....and Uncle Chris!

This video came to me via my brother-in-law, Corey's brother, Ethan's Uncle Chris. During their kids' ice hockey practice last night, Chris was telling my sister that the PBS show Arthur did an episode explaining about Asperger Syndrome. He also told her that his 3 eldest kids were glued to the TV during this episode because they knew that it was similar to what Ethan has.....and I LOVE THAT!!!!!

So this morning, I found the episode on PBS's website, and I watched it. The show did a WONDERFUL job of explaining as well as showing the positives & the challenges of having Autism Spectrum Disorder. If you are wanting to start a conversation with some youngsters about ASD, this would be a great way to introduce the subject.

Quirky Behavior

This is a video from last night. We were all in the kitchen, cooking dinner, and Corey pulled out his camera phone to capture Ethan. In this video, you will see a couple of things. 

First you will hear Ethan's speech. He has come such a long way thanks to speech therapy & hard work. However, his speech is still considered delayed as well as non-typical. In this video, Ethan is drawn to the comfort of a memorized speech....in this case a Pizza Hut commercial. This is very common at our house. You will also notice that in order to pull him out of that rote response, I use the commercial as the topic but engage him in a non-scripted conversation.


Also, you will see several odd behaviors. These are some of the red flags that caused us to wonder if Ethan had autism. Notice the big yoga ball? We use this as part of Ethan's OT at home. We use it for several different types of therapy.....rolling on it for balance, bouncing on it to wake up his system, rolling it on his body to calm his system, and so on. The thing you will notice, however, is how he is rhythmically "banging" his head on the ball. This is just something he does....we don't encourage it or discourage it.....we just pretend like he's not doing it & make sure he can't hurt himself. Most of the people that we have talked to say that this is self-soothing & Ethan needs it.

You will also see that at one point, Ethan runs into the living room & does a hand-stand on the couch. He does this A LOT! He LOVES to hang upside down. And typically he will do this for a longer length of time than seen here. Although it isn't in this video, Ethan also likes to spin in circles. These are all behaviors that Ethan exhibits that were considered "odd behaviors" at the Autism Diagnosis Clinic.

I hope this video doesn't disturb you, but rather informs you....this is my intent in posting this video. To us, this is typical behavior because this is just what Ethan does.....and I guess we are used to it. And I know it's not the "correct" answer, but come on.......who wouldn't put birthday cake on their pizza!!!!????

A Helpful Email

This morning, I received a very helpful email!

"Hey Jessica, My team and I did the research and compiled this infographic as an introduction to Autism and Education in America. I thought you might like to take a look and share it with your readers/colleagues as a good introductory resource."

I left out his name for privacy reasons, but I am so appreciative of him sending me this information! You can either click on the link above or view the material below. It is such a visually pleasing & nicely organized way to explain all of the factors of autism. I love it! THANKS!!!!

Meltdowns Explained

A couple of days ago, I focused on TRIGGERS. Now, let's talk about MELTDOWNS.

A meltdown is similar to a tantrum or fit.....they appear to be the same. However, they are different in many ways. Autism-Causes.com does a great job of listing some of the characteristics of the meltdown & how they are different from a tantrum. Here is what they had to say......

The meltdown is a common autistic characteristic feared and dreaded by both caregivers and autistics. Not to be confused with a temper tantrum. There are differences that are easy to spot if you are looking.

1. During a melt down, a child with autism does not look or care, if those around him are reacting to his behavior. A child having a tantrum will look to see if their behavior is getting a reaction.

2. A child in the middle of a meltdown does not consider their own or others safety. A child in the middle of a tantrum takes care to be sure they won't get hurt.

3. A child in the meltdown mode has no interest or involvement in the social situation. A child who throws a tantrum will use the social situation to their benefit.

4. Meltdowns seem to move along under their own power and wind down slowly. With a tantrum, it will end suddenly when the situation is resolved.

5. A meltdown gives the feeling that no one is in control. A tantrum will give you the feeling that the child is in control, although they are pretending they are not.

6. The meltdown usually begins when a specific want has not been permitted and after a point, nothing can satisfy the child until the meltdown has run its course. A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal.

To be honest, it IS very difficult to distinguish between Ethan throwing a fit and having a meltdown. We have worked so much with Ethan on controlling his anxiety & feeling loss of control that his meltdowns are not nearly as bad as they had been at one time. So, they are looking very similar to his temper tantrums. If Ethan looks like his bones have instantly disappeared...causing him to fall into a pool of weightless body on the floor, that's a meltdown. Stomping his feet at the same time, that's a fit. I have definitely mis-judged which is which several times.....which makes parenting Ethan a bit more challenging.....but I try to be as consistent as I can. I feel that if I'm loving but firm, I will be fine either way.......fingers crossed!

When a meltdown does occur, I have found that there is nothing one can to except to do all you can to keep them & others safe from harm. A lot of times that just means waiting it out.....and then use the teachable moment that occurs after it is finished. If you have ever experienced a meltdown or been around when a meltdown is occurring, you now know why focusing on PREVENTION of a meltdown scenario is so critical. For me, I do all I can ahead of time in order to prevent a meltdown from happening....no matter what others may think of me. 

A meltdown is a scary thing. When Ethan has a meltdown or I can see one coming on, I feel so helpless. I want to help him, but I can't. In fact, sometimes I have made it worse. When his anxiety is already escalating, and I get in his space to comfort him or start talking to explain things to him (causing more noise & confusion), this will push him over the edge. So, if I see it coming, I usually try & remove him from the situation in order to calm him down....this seems to be the best thing we have found to help Ethan. We also help Ethan by giving him lots of down time after social events like school, church, family gatherings, going out to eat, shopping, etc. He needs this time to "re-charge" his system, and prepare for the next thing such as family dinner, playing with cousins or friends, etc.

We have also really focused on Ethan learning & understanding independent coping skills. He can cover his ears when it's too loud for him.....and, yes, we had to teach him to do this.....prior to this, he would just meltdown. We have to teach him to "use his words".....and then give him the words to use. I remember thinking how funny it was for me to teach my son the phrase, "I don't want to, Mom.".....after asking him to do something he didn't want to do.....like take a bath or clean up his toys. But I needed to give him these words & prompt him to use them, otherwise it would be a meltdown from the transition. It was just difficult to teach him to express his feelings.....and then make him pick up his toys anyway! HA! We have puppets that we used to play this "game" with....and that helped with confusion as well. (PS...transitioning from one activity to another is a very common trigger. Giving lots of warnings or having a transitional support aid...like a timer or schedule...is very helpful.)

Ethan's meltdowns have definitely lessened since being in an early intervention program. Through speech therapy he is able to express how he is feeling more & more, through occupational therapy he is able to handle more & more environmental sensory stimulation, and through developmental play at his school he is able to understand this world more & more. But when the meltdowns happen.....and they will happen.....all I can do is keep him safe, stay consistent, and try to help Ethan through the issue. And when he is calm & has moved through the situation, I give myself short break. I need a moment to cry, to pray for strength & wisdom, to give myself distance & perspective, and.....to get another cup of coffee.

Triggers Explained

If you spend anytime reading this blog, you will hear these two words often.....TRIGGERS & MELTDOWNS. I would like to spend a few minutes today exploring TRIGGERS.

A trigger can be anything in one's environment that will cause an individual to feel anxiety, uneasiness, terror, or out of control...which leads to that person having a meltdown. It can be a change in one's environment, a change in routine, or something as small as the ticking of a clock or the smell of one's perfume. In fact, when I was in my last year of college, one of my professors told us that we may want to consider not wearing perfume when we were in the classroom. Not only could it bother kids' allergies, but it could trigger meltdowns. In fact, to this day, it is my habit to not wear perfume because of this.....but don't worry.....I still wear deodorant! HA!

Triggers vary greatly from person to person. There are some common triggers that we are aware of....such as change in environment or routine....but it is more beneficial if you know the person well enough to know their specific triggers. For instance, our Ethan DEFINITELY has triggers that we are aware of....and I'm sure some of which we are unaware.

Ethan's known triggers are.....

1. TV - We have to be very careful of what we watch on TV.....especially cartoons. In fact, over the last couple of weeks, we have "banned" Disney & PBS from our TV. Not because we don't like them, but the cartoons on these channels have a lot of characters falling, screaming, and pulling with grunting....all of these which cause Ethan to meltdown. What he prefers to watch? Commercials. His current favorites are Pizza Hut, Pep Boys, Menards, any fast food restaurant, and Fisher Price. We don't even watch kid movies unless we have his sound proofing headphones at the ready.

2. Loud noises - Kids yelling, the smoke detector, me hollering down the hallway to Corey, a hairdryer, vacuum, blender, etc......these are all triggers that Ethan has or has had in the past. He is doing much better with most of these. The trick is warning him that it is coming. We have been told that loud noises literally hurt his ears....because he has sensitive hearing. But, I also think it's partially because the noise seems to come from out of the blue. Through giving verbal warnings, these triggers have lessened. The trick is to know that the noise is coming.

3. Being told "no" - For a long time, I honestly thought when we told Ethan "NO", that he was throwing a fit instead of having a meltdown....so he would sit in time out. But recently, I realized it isn't being told "NO" that is the issue. The issue is that he thinks he is in trouble.....and this heightens his anxiety. This is something I realized this past week. He would ask to turn the lights out in the living room so he could see the headlights on his cars better. Usually, it was during the day, and I would say yes.....and the rest of us could still function with the daylight. However, one time he asked me, it was after the sun had gone down. Turning out the living room lights, would put us all in the dark, so I told him no. This caused Ethan to throw a fit.....or so I thought. When I was finally able to reason with him, I asked him why he was sad. He yelled, "We DO NOT turn out the lights." Then it dawned on me....this is the phrase that I use during our time out conversations.....example: "We do not hit our friends." Is he upset because he thinks he is in trouble? So I simply said, "You are not in trouble. I just want to keep the lights on so I can see." The crying stopped instantly. So, now when he asks for something, and the answer is no....and the meltdown comes....I have started saying, "You are not in trouble".....and he calms right down. It lessens his anxiety. I'm hoping, now that I know what the underlying issue is, that this trigger will eventually fade away.

4. Tone - This one is kinda tricky. There are certain songs that we can't listen to because some of the notes cause a meltdown. Now that Ethan is more verbal, he is able to tell us "a different song", and we know to skip that song because it bothers him. A popular song that has the tone in it is Happy Birthday. We only recently have been able to sing Happy Birthday because not only does the song bother him, but the clapping & cheering afterwards bothers him too. For his last 2 birthdays, we have had to sing this song fast & not cheer at the end. It still bothered him, but not enough to send him into meltdown mode....just a little nervous whining. In order to help Ethan become immune to this song, I randomly sing it when I light a candle in our home. Then, I let him blow it out......and then I re-light it. LOL. I know it seems silly, but he really likes blowing out the candle....which helps him endure the song/tone. And since it is such a random occurrence in our home, I'm hoping this will help him over time. Only time will tell, I guess.

I have been told that Ethan's triggers will change as he ages.....some will leave & new ones will appear. One of the funny things about being aware of Ethan's triggers.....which are mostly sound issues......I have found that I am becoming more annoyed at sounds. For example, this past summer, I was helping my sister work in her classroom (she is an elementary teacher). As we were walking through the gym, I could hear the hum of the lights overhead. I immediately wondered if it would bother Ethan. However, my sister, who has walked through the this gymnasium thousands of times, didn't seem to notice it at all. A couple of days later, Ethan joined us at the school for a couple of hours while we waited for Corey to come & get him. My sister wanted to show Ethan another teacher's room.....she thought he would enjoy the word wall.....which he did. But, we had to get to this other room by walking through the gym. I quietly watched as my sister took Ethan's hand and led him towards the gym. Sure enough, the moment Ethan got to the entrance of the gym, he stopped & put his hands over his ears.....he could hear it too. He was able to continue towards the classroom.....but covering his ears the whole time they were in the gym. Of course, this may have been different if there was a gym full of kids talking & playing.....he may not have heard it at all.....but who knows.

My point is that since I am constantly on guard for triggers, now I have developed a bit of super-sonic hearing myself! You would be amazed at the noises I am now aware of......I know where the heating/cooling fans are located in stores, I know which stores have automatic flushing in the bathrooms, my seating preference in a restaurant is away from the kitchen, and I am unable to think clearly if there is a lot of noise going on in my environment. In fact, my sister has asked me to walk through her classroom, and look for possible environment triggers?! What a great idea!!! Thanks to Ethan, I can now add to my resume.....Noise Detective Jessica is on the case! LOL!!!!

Autism Family Orientation Clinic

My goal for the next couple of postings it to type up all of my notes in my ever growing pile of papers. I need to clear it out & file some of the older things. So, today I will be noting what I learned from a Easter Seals clinic that my husband & I attended in July 2011. I'm a bit behind........

This one-day clinic was specifically designed for New Diagnosis Families. The class was divided into 5 parts: What is an Autism Spectrum Disorder? What causes Autism? What happens now? What can I do to help? and What can I expect for the future?

What Is Autism Spectrum Disorder?
*Autism is a complex, brain-based developmental disability that typically appears during the first 3 years of life.

*Impacts the typical development of the brain processes related to social interaction and communication skills.

*People with autism typically have difficulties with verbal and non-verbal communication, social interaction and leisure or play activities.

*Autism is a life-long disability.

*Currently, there are a lot of studies being done on the brain of people with autism. Some early results are showing that sizes of parts of the brain are different than the average brain.

*High-functioning means the person has a high IQ.....not that they can cope well.

*There are several autism diagnosis: Classic Autism (this is Ethan's category), Asperger's Disorder, Pervasive Developmental Disorder. Easter Seals told us that in the year 2014, there will no longer be categories. All will receive a Autism Spectrum Disorder.....no longer separate categories.

*Sensory sensitivities are actually painful to the individual.

What Causes Autism?

*We don't know!

*Many studies are being done to discover the origin. They do know that it is strongly genetic. It is generally regarded to be of neuro-biological origin. Researchers suspect that there are a number of different genes that, when combined together, increase the risk of autism.

*In 1998, a very small study (only 12 subjects) was published that suggested a causative relationship between the MMR vaccine & autism.  This caused many families to choose NOT to vaccinate their children.

*However, this study was retracted in 2010 by the same authors of that study as well as the medical journal that printed it. "We wish to make it clear that in this paper no causal link was established between MMR vaccine and autism as the data were insufficient."

*The Immunization Safety Review Committee on MMR Vaccine concluded that there is NO association between autism & the MMR vaccine.

*Another theory has been tested & tried is the Gluten-free, Casein-free diet. However, Dr. Susan Syman of the University of Rochester reported on her study that shows this diet does not appear beneficial for children with autism. "The removal of gluten and casein from the diet of a controlled group of young children with autism did not demonstrate a change in sleep habits, bowel habits, activity or core symptoms of autism," Hyman said.

*However, on a personal note, more the half of the people in our class told us that this diet has helped their children TREMENDOUSLY. So, I say...if it works, great. If not (as in Ethan's case), great.

*There are several theories being tested: gastrointestinal abnormalities, immune dysfunction, impaired detoxification, nutritional deficiencies or imbalances, and so on. However, overall, at this time, there is little solid, scientific evidence to support these proposed biomedical causes.

What Happens Now?
*Research has show that early detection and intervention can make a significant difference in the life of a child with autism.

*In fact, with appropriate early intervention services, from ages 3-5, between 20% and 50% of children diagnosed with autism will be able to attend mainstream kindergarten. (This is why I am so passionate about Ethan's early intervention.)

*Our instructor told us this....If the child has spoken words by kindergarten & there is a high cognitive development, studies are showing that that child has a high likelihood of typically functioning in the adult world.

*There are several types of therapies to consider: Applied Behavior Analysis, DIR Model Floortime, TEACCH Structured Teachin, Speech-Language Therapy, Occupational Therapy, Sensory Integration Therapy, Social Stories, PECS, Relationship Development Interventions, Music Therapy/Auditory Integration Training, Assistive Technology, Special Diets, Vitamin Mineral Therapy, Chelation Therapy, and Medication Therapy.

*When choosing your intervention strategy, remember that each child is unique & have different needs. Base interventions upon the particular strengths and weaknesses of the individual child. Usually, a multidisciplinary approach is recommended.

*Best Practice Guidelines: Starting early is very important, More intensive treatment leads to better outcome, Family involvement is crucial, and Intervention should be individualized to best meet the needs of the child and family.

What Can I Do To Help?
*Parent Tool #1 - Increase Environmental Stucture - We all use visual aids & schedules, but it is critical & effective way to support your child.

*Parent Tool #2 - Have Fun with Your Child! - Don't let them withdraw into their own world....lure them out gently & creatively.

What Can I Expect For The Future?
*We don't know. However, we can promise that your child will continue to grow, to change & to learn! It's up to all of us to help them to reach their maximum potential!

*With appropriate services & guidance, all people with ASD can learn to be part of the world around them, and live a meaningful and productive life.

*If you're willing to learn from your child and love him/her unconditionally, you will find your life enriched by the experience. It happens all the time. Parents and family members the world over become more compassionate, learn the power of love, and discover reserves of courage, determination, creativity, and fortitude they never knew they possessed. And you will too!