Suicide and Autism

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It is important to recognize the signs of depression or suicidal ideation in your loved ones. If you suspect a loved one is contemplating suicide take them to a licensed medical professional immediately. Only a psychologist, psychiatrist, or medical doctor can diagnose depression with suicidal intention. If you are contemplating suicide please stop reading and call the National Suicide Prevention Lifeline: 1-800-273-8255 or dial 9-1-1 and get the help you need. Suicide is never the answer to any of life's problems, get help now.
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Dark topic, I know. I opened my Facebook page and found a news report today that made my heart drop. The report comes out of Prince Rupert, Canada, where a mother killed her 16 year-old, severely Autistic son, Robert, and then kills herself. Before you harshly judge Angie Robinson for her actions, please read the news. I am never of the belief that suicide solves any problems and I would never insinuate that I support her decision, but I understand the emotions that took her there. My son is high functioning and on most days I can feel my hairs turning gray, I can only imagine what our moderate to low functioning parents go through. She was not finding the help and services she needed to properly care for her son. She knew she was losing control and she was alone. This story saddened me greatly. I felt pity for her, her overwhelming situation and the deep sadness she must have felt. I also felt a great sense of grief for her son, Robert. None of this is his fault, he did not choose to have such a severe form of Autism and he probably did not understand his mother's sadness or how he could help her. This story also made me wonder. In 2010 the AFSP (American Foundation for Suicide Prevention) states there were 38,364 reported suicides in the United States, which amounts to one every 13.7 minutes. What are the suicide rates in the Autistic community? 

Here is a link to the news article from The Province:   http://www.theprovince.com/news/Prince+Rupert+left+suicide+note+saying+could+longer+care+severely+autistic/9768605/story.html

There are lots of stories out there about murder suicide of parents in the Autistic community. I don't suggest you go digging for them, they are all very sad and some extremely violent. Ironically I cannot find any statistical information on murder suicide rates in the Autistic community. This is not only frustrating, but grossly overlooked. This is a very sad and real problem that faces our Autistic community. The lack of data in this community is disgustingly neglectful. I was able to find statistical information involving suicide and Autism, in fact there was a great amount of information released in 2013, so hopefully this is a step in the right direction, as far as knowledge is concerned.

Suicide in Autism is almost always relegated to the High Functioning and Aspergarian end of the spectrum. A group of Penn State researchers published their findings in Science Daily regarding this topic. They polled a group of parents of children 1-16 years of age. They had a total of 1,012 subjects, of which 791 were Autistic, 32 were non-autistic depressed children, and 186 typical children. They found that Autistic children were 28 times more likely to have suicidal contemplation or attempts than their typical peers at 0.5%. Four significant variables stood out in this study above any others; those four variables were 1- race, Black or Hispanic, 2- age, 10 and up, 3- socioeconomic status, and 4- sex, male. I think it is intensely interesting that IQ or the individual functioning level was not one of those four factors. 

Why is the suicide rate high among our high functioning kids? I believe this is due to two reasons, isolation and bullying. There is a level of discrimination in the United States, even if we do not believe it; perception is reality, if an individual perceives discrimination than it is real to them. That may be one of many explanations for the racial factor involved in the factors discovered by the Penn State researchers. Discrimination is a form of isolation and it can only be aggravated by the "odd" behavior exhibited by an Autistic personality. Autistic children are very frequently ostracized by their peers and have very few friends. They know they are different and it is frustrating to them. An obese teen knows they are obese and they are also subject to isolation or constant teasing from their peers. These two conditions are very different, but the emotional pain is very similar. Due to their isolation most HF Autistic or Aspie kids have low self esteem. It takes a special person to see through the behavior and befriend an Autistic individual. Never underestimate a true friend to your Autistic child. Due to their oddity and isolation Autistic children are a target for bullying. I have very strong feelings on bullying. Bullying is abuse! There is no other explanation for it. Bullying is peer on peer abuse. Bully causes long lasting effects and trauma on the victim, more needs to be done to stop bullying. I have some theories on how to handle bullies, but that is more appropriate for another time. Click here for more on this study.

Scientists are noticing a trend in the behaviors of HF Autistic and Aspies they call "depression attacks". Much like an anxiety attack these states are sudden and overwhelming. There is no warning for these events and usually there is always a trigger for the behavior. Interestingly, the amygdala of the brain tends to be 10-15% larger in Aspies than in a typical peer. The amygdala is located in the temporal lobe of the brain and controls the processing of emotions. The depression attack causes an overreaction in the amygdala, which causes a very strong physiological response. To read more about depression attacks and the physical reactions to one please see this link.

A lot of these studies talk about kids and teens, but what about adults with Autism or Aspergers? It is very hard to find any information about suicide rates among adults with Autism. One study published in the UK came out of Japan. The author estimates that adults on the Autism spectrum are 700 times more likely to attempt or commit suicide. This seems outrageous to me and to huge of a jump from the studies done on our kids with Autism. This disparity just shows we need more research. On thing they did point out struck me as being true, those with Autism are likely to commit suicide using very serious means and are usually successful on their first attempt. You can read this article by clicking on this link. 

It is easy to understand that depression, isolation, and abuse are major contributing factors to autistic adult suicides. A study conducted in 1981 with 34 Autistic subjects determined that 30% were also depressed. Another study conducted in 1998 on Aspies showed a similar result. In 2002 a very interesting scholarly paper was written compiling a lot of this information. In this paper the authors point out that in the general population depression is commonly coupled with other psychological disorders such as anxiety, this is also true in the Autistic community. If you want to know more about depression and its links to Autism I strongly suggest this paper, it is an easily understood and fantastic read: 

http://deepblue.lib.umich.edu/bitstream/handle/2027.42/44620/10803_2004_Article_374852.pdf?sequence=1

Here is a link to another blog about Autism and suicide:
 http://questioning-answers.blogspot.com/2013/10/suicidal-behaviour-in-autism.html

Link to recognizing signs of suicide and tips on how you can help:
 http://www.autism-help.org/family-suicide-depression-autism.htm

I'm sorry to post such a sad topic tonight, but this is a very serious problem and it needs to be addressed. I hope this has helped you find the answers you may be searching for. For support, community, or helpful links to many organizations, please visit our Facebook page, Aiden's Heroes. Good night and God bless.

Organizing Autism

Today I'd like to talk about organization. Organization in some areas of your life will help you avoid long term headaches, especially now that you have a serious diagnosis in your life. I hope you find these tips thought provoking and a helpful starting point.

One of the first things I personally bought for my son's records was an accordion file. I now have two of them. Find a filing system that works for you. I'm considering moving all my files to a binder or tapper keeper. If you decide to use a binder I would strongly suggest one that zips closed. It will help keep paperwork inside that may work loose over time or with use, also consider page protectors, so you don't have to punch holes in important paperwork. Whatever works best for you is ideal, just make sure it is portable. I bring Aiden's files to all new doctor appointments, new therapist appointments, and will be bringing it to the school every new class year. Why? You never know what you will need. It keeps everything in one place and safe. Organizing your medical paperwork will save you hassles in the long run. I have made a section for each doctor, each therapist, insurance information, copies of his birth certificate/ social security/ and insurance card, grants, diagnosis and test results. Here is a great site with tips for creating your special needs binder:

http://organize365.com/organizing-childs-special-needs-binder/

Consider tracking your child's behavior, diet, etc with an app for your phone. Yes, they make them and a lot of them are really good. I use one called Autism Tracker. It uses a picture guiding system for your logs and it cover tons of areas. It even has an option to track more than one child and to email reports to who ever you designate, which is hugely helpful for therapists. There is also an app I used called ShopWell. This is great for diet purposes. All you do is mark allergens or any other areas you'd like to avoid. When you go shopping open the app and scan the bar code. The app will tell you if there is something in the food you need to avoid, based on what you told it. 

You will find that your individual child with Autism will gravitate toward certain toys or interests. Aiden was drawn to cars while in his one's and two's, but now in his three's he is drawn to wrestlers. In fact it’s safe to estimate he owns 20+ wrestlers at this point. Buy those storage boxes! He has a bin with latching top for his "guys" which are his superheroes and action figures and a completely separate box for his wrestlers. They cannot be combined and he knows each one individually. Don't think you can hide one from him either, he knows which figures he has and asks for one's he does not. These boxes will provide not only sanity for you, but a cue for your child. Every child keeps things in a constant state of mess, but these identifiable boxes help them find the toys that mean most to them. And they are a lifesaver during clean up. 

Try to create areas in your home with specific purposes. An area for eating, sleeping, playing, and homework or life skills is a good foundation. Most of this is already created by the natural flow of a home and don't think it has to be a room for each function. A desk in the child's room can be assigned for homework only. Do not allow toys or play things on the desk, which is a desk for homework only. Keep a light on the desk that is on for homework and off every other time. When the homework light is on, turn off or dim as many other lights in the room as possible, this helps create a mental barrier and may help promote focus. I have heard a mother with an Autistic child talk about setting a timer for homework.

Homeschool Organization Ideas

The problem with Autism is also its gift. Intense focus on areas they love and lack of interest in areas they do not. The timer makes it a kind of game and may help engage your child in a subject they do not enjoy. Her son is rewarded with time on a video gaming system. Push your creativity in this area. Find out what they like and use that to your advantage. 

Aiden helps me put his laundry away. Amazing? No, kids love to help in general, use that to your advantage. How does Aiden help me put clothes away? I put pictures on the outside of each respective drawer. For example, his T-shirt drawer has a blue t-shirt picture on it. This helps him learn what each item is and it helps him find what drawer he is looking for quickly. Just a tip, don't bother folding their clothes. Sounds funny, but what is honestly accomplished by folding your child's clothes or is it one of those social norms that everyone falls into? Why do I say not to fold? Well my child pulls all his clothes out of his drawers and throws them around the room. He is fascinated by the different colors and textures of his clothes. Instead of getting mad, why not just put them back and move on? As he gets older I will teach him how to fold and teach him why it is socially acceptable to do so, but now I'm much happier not to fold. Everything is a give and take, weighing out what you are willing to do. I am not willing to fold his whole wardrobe five times a day. Thankfully we have almost completely stopped the clothing redecorating from him. 

Helpful for older children with Autism is a large visual calendar. If your child cannot read, use picture calendars. The calendar can be a tear away desk calendar or a large magnetic calendar. Assign each family member a color or picture. Then write out the entire family calendar every month. It will not only help your whole household, but it is important for Autistic individuals to feel in control of their environment. If they know what is happening in the life of the family and they can see what events they will be attending, it helps them anticipate the upcoming event. It is also a social cue indicator. For instance, if there is a wedding, there are more social graces necessary for that event than attending a school PTA meeting. It helps the person mentally prepare for this event and they don't feel surprised by their everyday life. Here is a simple example of a picture calendar for Autism, created by the CARD program: 

If you want to create a meal calendar for the month, feel free. It gives the kids a menu to look through for the day and it lets them know what your meal expectations of them are. For instance if you want your kids to eat a Lunchable for lunch instead of a sandwich, since soup and sandwiches are for dinner, then putting it on a menu could avoid an argument over Lunchable vs. sandwich all together. "This is the menu we follow and this is what you will be eating" is a solid reason and it helps shift any kind of blame off you and toward the menu. A menu simplifies your life, since your partner will know what to help you prepare and it makes looking ahead easier during food preparation. This gives your Autistic child a "play book" of food and these kids love rules with clear expectations.

Feeding into the rule situation, my family created a "Rule Board". This is a cork board with construction paper stapled to it. My son helped me create the board, he picked the colors, and we wrote each rule with each applicable consequence together. This helped him learn the "rules" and the written consequences provide a constant guide for a parent who maybe frustrated or angry at the time of punishment. Parents are not perfect and sometimes having something else does the "thinking" for you will help. Be consistent with your punishment. This is true for every child, but especially with your Autistic child. Talk to your ABA therapist and include your spouse or significant other in these topics. Tell other people who care for your child what consequences you expect for certain actions. This keeps consistency across the board and reinforces the teaching. Invest in a small timer to keep near the time out area. This will give an audible tone when the consequence has concluded and the child can return to their activities. 

Finally, let’s talk about going outside. When you leave your home you will always have something with you for your Autistic child. My son's Nabi is a constant fixture in my bag. I have transitioned from a purse to a backpack; it’s just easier for me. I carry water, snacks, and diapers with me always, that's the price for motherhood. When I go out with Aiden my bag expands a little, with the Nabi, a wrestler or two, maybe a book or coloring book. You must travel with items your child like and are acceptable focus items for them. It will save you in the long run. I leave some of these things in my bag, they never leave it. I am going to be purchasing a backpack for Aiden that he will learn to pack up and take with him. Independence teaching is vital to future life. Control of their environment is key.

Show me how you are doing! Post your creative ideas on our Facebook page- Aiden's Heroes or post pictures as a comment to this blog. Share your creativity with others and help them along their journey as well. You always have a voice here, with us.

Autism and Law Enforcement

Hello everyone. I diverted from my options of topics and decided to post a little something to my brothers and sisters in Law Enforcement. That's right, I'm a cop and my son is Autistic. There are approximately 313.9 million people in the United States. Of those approximately two million people in the United States suffer with Autism. One in every 68 children will be diagnosed with Autism. Did you know a person with Autism is seven times more likely to come into contact with Law Enforcement? Did you know that almost 50% of those on the spectrum are non verbal? Would you know the signs? I want to help you recognize, adapt, and overcome this encounter.

How would you come into contact with an Autistic person? Most common are missing person calls. Next could be what appears to be a physical fight, or domestic disturbance, but is actually an action called a meltdown. The call could reference a wondering person or strange adult approaching children. You may even get a child abuse call. As any seasoned officer will tell you, the possibilities are endless. What does an Autistic individual looks like? That varies. They usually look like you or me, very typical in appearance. So how do you determine an Autistic person from a "normal" person? Use what you normally do, observe, listen, and think. You should be able to figure out this is an atypical interaction pretty quickly. Here are some helpful tips to help you along the way.

When you respond to any scene, look for Autism ribbons or other indicators of autism. They could look like this: 

First let’s address physical mannerisms. Autistic individuals are just that, individuals. No two people with Autism are the same. They have different likes and dislikes, different aversions, and different cues. Here are some of the most common signs that the person you may be dealing with is Autistic.

- Obvious Sensory Overload: At the sight of your flashing lights, the sound of your siren, did the person cover their ears and close their eyes? They may even fall to the ground in a fetal position. This is a major clue. If it is safe, shut down this equipment. If you cannot shut off your lights, due to traffic conditions, etc, minimize what you can. They may even try to run from you, this will make your job the hardest at first.

- Echolalia: Echolalia is the meaningless repetition of another's spoken word. Does the person repeat what you say or the questions you ask? They are nervous. Slow down, speak clearly, take longer than normal pauses between questions and try asking your questions in a different format: Where do you live? vs. What is your address? vs. Where is your house?

- Spinning: The individual may start spinning in circles. Sometimes they do this when they are crossing a threshold. This is a calming mechanism.

- Body Rocking: Just as it sounds, are they rocking back and forth? This is also a coping mechanism.

- Hand Flapping: The individuals hands will flap at the wrist, almost like their hands are trying to fly. Again, another coping mechanism.

- Spacing Out: Do they appear to be in another world all together?

- What is in their hands? Are they walking around with a chewy tube, a rain stick, a small stuffed toy, stress ball, or something you cannot identify? If you observe one or more of the above behaviors, or something you may not expect, they maybe Autistic, do not be alarmed if they do not hand over what they are holding. Ask them if you can see it. They may hand it over immediately; they may pull it away and try to hide it. Don't be alarmed, just watch them and start talking about something else. DO  NOT  TRY  TO  FORCEFULLY  TAKE  IT! If they willingly hand the item over, hand it back quickly, this is their security blanket and if you keep it you will bring on a meltdown, you do not want that. If they do not hand it over initially bring up TV shows, action heroes, etc. After you build a rapport with them try asking for the item again.

What the heck is a chewy tube? It’s a tube or item made of a resilient material for chewing, this can be a calming habit or a practice tool. Chewy tubes come in many shapes and sizes, but are always manipulated with one hand and are always brightly colored. These are examples of a chewy tube:

What is a rain stick? It’s a musical instrument. The one you will probably see is a plastic tube with beads or small plastic balls inside that bounce off platforms. This tube will emanate a sound that likens rain. This is an example of a rain stick: 

Special considerations for missing persons:

1- Check the house. This is a no brainer for us, since we know most missing people are still in the house when the call goes out. Autistic individuals have hiding places they love to use. 

2- Ask the caller or complainant for a piece of clothing. This could be useful for a K9 track if necessary. Do not rely on a starting point, since the parent or caregiver has been all over the house looking for the person.

3- Check bodies of water in the area. Pools, lakes, ponds, streams and rivers, any body of water no matter how ridiculous. According to the National Autism Association drowning is the leading cause of death among Autistic individuals. They further add to this statistic by stating in 2009, 2010, and 2011 accidental drowning accounted for approximately 91% of deaths reported in children with Autism Spectrum Disorder from the ages of 14 to younger, subsequent to wandering or eloping events.

4- What are common places they like to go? School, grandma's house, playgrounds, etc. check them or ask someone to check them.

5- Autistic individuals thrive on routine, so what are common ways they get to the places they typically go? By bus, taxi, or train, how would they attempt to get there?

Calls for Service:

At first someone with Autism may appear to be high on drugs or be mentally ill, give it a minute before jumping to these conclusions. Ask some questions. If their parent or caregiver is there listen to them for clues and guidance in this situation. If not, let your training and experience tell you if this is a different kind of interaction. Do not be alarmed, if you suspect Autism, and the individual reaches for you or your badge. Autistic people are attracted to shiny objects. Anything on your duty belt that reflects light could catch their attention. They have no concept of personal space. These individuals will not hurt you, they are simply curious. If you do not want them to touch you, be gentle. Say no, no and redirect their attention to something else. They may grab a hold of you and not want to let go, offer them your non gun side. I am right handed, so I would offer them my left hand. Take this action as a compliment, they trust you. Conversely some may shove away from you. Each one is individual, try to let them initiate physical contact. Typically Autistic individuals will carry cards in their wallets that explain Autism. It’s scary when someone reaches behind their back to retrieve their wallet, we see it often. Take control, but if you suspect Autism, do so gently. An Autism card the individual may carry in their wallet could look something like this: 

What if they aren't reacting to you? How do you get through to them? Bring up different topics. Offer them something they seem to like, as long as it is safe. Try a business card or a stuffed animal you may keep in your car for calls involving children. Stickers or coloring books are great, inexpensive items to have on hand. Keep different kinds of topics like superheroes, my little pony, transformers, cars, anything kids like in your patrol car or paper box. You will get a strong response when you hit a topic they like. If you are lucky they will give you a verbal response.

A helpful tool for you would be something small and very easy to keep in your paper box under a folder marked Autism. It’s a sheet of paper with the alphabet written or printed on it. Nonverbal does not always mean unable to communicate. They may be able to point at letters and spell words to you. Another tool is something as simple as Velcro strip on a piece of cardboard. Keep baggies of recognizable pictures, different facial expressions, places, foods, etc. with Velcro on the back. You can then ask: How do you feel? Let them pick a face and put it on the board. Both of these are cheap to make and could save you if you come across a non verbal individual.

Let’s say the interaction goes sideways and you end up with a meltdown, what do you do? First, what is a meltdown? A meltdown is like a seizure. It will not stop until it has run its course. Meltdowns look a lot like temper tantrums. It will last a couple of minutes, but it could be violent in nature. This is an example of a meltdown: https://www.youtube.com/watch?v=w_23z9yJAq0  In the video you see them restraining him, giving him water while he is laying down, etc. I highly recommend you do not give water to anyone lying on their back. If you can avoid restraining them, please do. Clear the area of things that can hurt them, try to eliminate loud noises or bright lights in the environment, and let them work it out. I will talk about the right way to restrain an Autistic individual in a few moments. If there is one thing you should remember, during a meltdown, they do not know what they are doing. They do not if know they hit you, do not take it personally if they do.

If you must engage an individual in a meltdown, due to safety concerns, call for paramedics. One in three individuals with Autism also has Epilepsy. Keep that in mind when you go hands on. You are not a medical professional in any way, if the individual is hurt you may not know it. Articulate you believe you have an Autistic individual and they maybe enduring an Autistic meltdown. Ask for a back up officer, depending on size, two is always better than one, and ask for a supervisor. It is easy for them to hurt themselves or inadvertently hurt you during a meltdown. There is no intent to hurt you, I cannot stress that enough. Do not taser, pepper spray, or baton under any circumstance. You have one chance to make a positive impression on an Autistic individual; hurting them will cause a negative interaction with the next officer.

How to restrain: Remember Autistic individuals naturally have weak core muscles! You can cause them to go into respiratory distress by placing weight on their stomach and chest area. First, stay calm, look for a softer area to perform the restraint, grass is always better than concrete. Try to guide them to this area as best you can. Second, you must take all the weight of your own body. You will act as a type of blocker. If they are facing you, try to gently guide them to the ground, put your stomach on their pelvic area, and hold their wrists by their ears, their elbows bent. Do not lay your body weight on their stomach or chest area. You will probably be partially on your knees. If the individual is taller than you this will be too difficult to properly perform. Instead straddle their chest area, with your knees on the ground; again do not drop your weight on their chest. Instead hover closely over their body. Firmly hold their wrists by their ears, elbows bent. They will flail their legs; you are only one person and can only do so much. Instruct the next officer to hold their legs at the ankles. Keep in communication with your partner. Consider eliminating sensory input, lights on the patrol cars, sirens, etc. Do not allow anyone to drop onto their stomach area. This will be a fight, you will struggle and you will sweat. Talk to the individual calmly, please do not yell. If you can try quietly singing a recognizable children's song. Ask them silly questions like "Are you Santa Claus?" or "Is the sky green?" Assure them you're here to help and that you care. After they calm down, get off them and sit them up. Ask them if they are alright, let paramedics look them over. Here is a great reference for restraining the individual face down. Three individuals are necessary for this. This is called the BARR technique and is used in hospital settings:

Here is another suggestion for face down restraint with two individuals:

Here is a figure for safe take down and restraint in a one on one setting:

If a crowd gathers make the following statement: "This individual is Autistic and is enduring a meltdown. For their safety I am properly restraining them. If any of you know this person please identify yourself, if you do not, please take a few steps back." If you receive heckling ask if there is a nurse, doctor, or psychiatric specialist in the group. Ask if anyone else is willing to help.

The Autism Society of Greater Orlando is one of the agencies that frequently holds Law Enforcement Officer training courses. I have attended this training and it was amazing. Here is an example of such a course: https://www.youtube.com/watch?v=mg3tEkps268

If you are interested in ASGO's course please contact them through their website: http://www.asgo.org/

Other helpful resources for Autism and Law enforcement: 

http://www.autismspeaks.org/family-services/autism-safety-project/first-responders/law-enforcement

http://www.autismriskmanagement.com/documents/Law_Enforcement.pdf

Good luck and stay safe! If you have any questions please free to ask by commenting below or on our Facebook page.

A Little Frusterated

I'm so sorry everyone. I want to post up a new and informative post, but this has been a long and frustrating day. Everything I read I just can't focus on. In my search for inspiration I discovered tonight may not be the night for education. Tonight is a mental health kind of night. So before I put my Aiden to bed and pop open a bottle of wine I just wanted you all to know I am thinking of you. I hope you are doing well. I hope your day has been less stressful than mine. If it has been a stressful day relax knowing another person is in the world with you tonight and they understand your pain.

I will post up a blog tomorrow either about sibling relationships or autism myths from someone who's living it. If any of you have a specific topic need please let me know! Post a comment below and I will see what I can do.

That being said, raise a glass of your favorite beverage tonight. We've earned it.

Family Life with Autism Pt 1- Parents

You've received your diagnosis. How are you feeling? What are you feeling? Yes it matters. A study conducted in 2010 found that parents of Autistic children had a higher rate of divorce than non-autistic children. If a “typical” marriage lasts for 10 years, statistically, it is highly likely to be successful, this study found couples who had been married as long as 30 years were getting divorced. The divorce rate for Autistic families is approximately 23.5% compared to non-Autistic families at approximately 13.8%. The affect of Autism on your family is very real and you need to take it very seriously.

You will grieve. It’s a hard thing to accept when someone you love is diagnosed with a lifelong disorder. The six steps of grieving are: Shock, Sadness, Anger, Denial, Loneliness and Acceptance. Be aware that everyone's grief cycle lasts for different amounts of time and different intensity levels. If you, a friend, a co- worker, or a family member receives an ASD diagnosis, be aware and be supportive. When we received our diagnosis a few things happened in our family, both good and bad. My husband and I have grown together even more, but that does not mean it was easy. We have had our disagreements over things like cost of treatment, what is truly necessary, and disciplinary hang ups. I learned a lot about myself as a person and as a mother. We discovered the beauty and marvel at our son's intelligence together. We laugh frequently at our son's humor and still have a deep love for one another. Is it possible to survive? Absolutely. So what are the negatives? I have experienced some of them. My stress levels are through the roof. This is common since mother's typically take over the care of their Autistic child.

Why is the primary parent's stress level so high? That is not so easy to answer. First, financially Autism is a huge impact on the family. On average, Autism costs a family approximately $60,000 per year. Most moderate to low functioning Autistic individuals will live with their parent or caregiver for their entire lives. If a family pays $60,000 per year over an 18 year course of life their cost of care will amount to $1,080,000, and over the lifespan of 50 years (that's cutting it short) they will pay approximately $3,000,000. Folks, no matter how you slice the pie in that situation that is a lot of money. Remember that's on average. My family is on the lower end of the scale, but the cost of care was still a shock when we did our 2013 taxes. On my first blog post, So Now What, I talk about what you can do to help minimize the impact of finances on your life with Autism.

Next would have to be personality type. I am a very type-A personality. My husband is a very go with the flow type person. When Aiden was diagnosed with Autism is was a blip on his radar, for me it was a 7.0 on the Richter scale of my life. I immediately launched into action throughout this first year. Research, doctor appointments, therapy sessions, home proofing, and financial juggling have been part of my everyday life since May 10, 2013. Now, things are starting to plain out and I'm noticing exactly how much stress I was actually under during that first year. There usually always at least one point of contact in the Autistic family, the other parent is aware and educated, but not to the extent of the contact parent. In my family I am the "educated" parent. I am the constant fixture at doctor appointments; I ask a great deal of questions and have total control of my Autistic child's treatments. My husband has filled a very different role and he is absolutely wonderful at it. He will typically focus on the overall nurturing of our two children. It is so easy to get swept up in the world of Autism. I tend to hyper focus on a problem until I feel I have it under control. This is how I understand my world. I'm glad my husband filled this role, it has and will be beneficial to our children.

In a short period after the diagnosis you will find out what type of family yours will become. I have found there are three types of families in the world of Autism: 1- All over educated, 2- Divide and conquer, and 3- The blissfully unaware.

The all over educated family is a situation where both parents are actively involved, equally educated and frequently involved in the research of Autism, therapy, and every other point of the child's life. This type is harder to find than the other two. This is an extremely healthy environment for the child, but be careful if this is your family. Have you ever heard the phrase "To many chiefs and not enough Indians"? This can easily happen. Allow one parent to take the primary role in scheduling appointments; usually the one with the toughest work schedule should do it. Shift worker would be a good example, that way they are sure to get enough sleep. Decisions should be made as a family in every family type scenario, but especially in this set up.

The divide and conquer family type is like my family. This family has one point of contact for everything involving the Autistic child. Therapists, doctors, and treatment care specialists will all usually contact one person. This person will then relay information to the other parent. This parent will be present at 90% of all appointments and if they are not they will always call to talk directly to the treating specialist. This person also conducts research regularly and is the active link between their family and the Autism community. This scenario is also very good, since one person is actively managing every aspect of this scenario. The managing parent should be defaulted to in all matters of treatment, after taking their spouse's opinion into account, since they are the most educated in this area. The pit falls of this scenario are evident. The managing parent is easily overwhelmed and usually very stressed. It is easy for them to feel alone and isolated since their spouse is not as involved as they are. Matters are even worse when the managing parent is trying to work with a parent who is in denial about the diagnosis.

Finally the last type is the blissfully unaware family. This is the hardest for me to understand. This is a family where both parents are either uneducated about Autism or they do not want to address the problem. It is frustrating for the previously described parent types to accept this group. Typically this group blames doctors for not curing their child. These children suffer the most and receive the minimal amount, if any, of treatment. These parents are generally less stressed in ways they can connect with Autism, but do show frustration with their child or children's behavior. Remember Autism is a serious, pervasive, developmental disorder. There is no cure. Intervention, involvement, and therapy are the best options for your Autistic child.

The typical spouse to take the reins as far as treatment and planning is the mother. Approximately 36% of mothers with Autistic children were found to suffer from depression and anger. A 2002 study found Mothers of autistic children were more likely to have a negative impact on their career than the father. Researchers believe the stress of the diagnosis, life style changes, financial worries, and less adult interaction involved in raising an Autistic child maybe part of this statistic. Last month, especially, was a hard month for my family. That was the time I started to decompress after the first year adapting to this new lifestyle. Due to my personality I had been running on adrenaline for so long I began to crash. In December 2013 I was diagnosed with Psoriatic Arthritis. My body had been under so much stress I am sure this disease's onset was accelerated by the impact of stress on my body. Exhaustion had set in by then, but I had trouble sleeping. I was constantly worried, stressed, and overwhelmed for no apparent reason. I became short tempered and snappy with my husband and my children. I finally broke down and talked to a friend over the phone for four hours. She was what I needed and now I'm doing a whole lot better. Talk. Ask for help. Seek out help. I was considering talking to a mental health professional to find ways to help my anger and stress adaptation. This is not a shameful thing; this is a necessary thing if you find yourself going through what I was.

Something that is not included with Autism information is an in depth explanation of possible parent issues. Be aware of yourself and your spouse or significant other. If you discover you are suffering or suspect trouble this is normal. This is part of caring for you. Never be ashamed to admit it and seek help if you or your family needs it. You must care for yourself to be a good caregiver for your loved ones.

Here is a link about stages of grief: http://www.autismspeaks.org/what-autism/autism-your-family
For tips on explaining the diagnosis to others, click here: http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit/how-will-affect-my-
Further information on divorce statistics, financial impact, etc: http://vaxtruth.org/2012/09/autism-and-families-stress-divorce-and-economic-considerations-a-review-of-the-literature/

Good luck. If you need us feel free to contact us through this blog or thorough our Aiden's Hereos Facebook page.

Autism and Epilepsy

Please let me warn you, this post is long, but it is full of useful information. It is long because there is so much you need to know about seizures and Epilepsy in general. Add Autism into the mix and there is a huge world out there. I have tried to condense this information the best I can for you. 

It is estimated that one in every three individuals with Autism Spectrum Disorder also has Epilepsy. That is a hard hitting fact. One in three individuals with Autism has Epilepsy. The more I say it the more awestruck I become by that fact. This is not something any one discussed with me when Aiden was diagnosed. This was not even on my radar screen as a possibility in his life, until I saw him have a very weird staring spell one day. This fact is probably the most astounding to people who do not know much about Autism. What does this mean to parents and caregivers? How can you tell if your loved one is suffering from a seizure or series of seizures? How is Epilepsy diagnosed? I'm here to help you find those answers. 

What does this fact mean to caregivers? I want everyone to be aware of this. This statistic is one of the first things you should be told as a parent or caregiver, but you are not. There are two reasons for this. The first is you have just received a critical, life changing diagnosis. That is hard enough to deal with, so instead of compounding the issues, it is simply not addressed. The second is to not incite paranoia. A shiver in the cold is not a seizure, any logical person knows that, but after receiving this information it may cause some people to overreact and misinterpret what they are seeing. In reference to this particular instance I would rather see over reaction than under reaction. Remember not all seizures are epilepsy. Sounds strange, but I will explain.

What is epilepsy? Epilepsy is a brain disorder in which nerves or clusters of nerves sometimes fire abnormally. These misfires cause disruption in the normal brain electric functioning, resulting in the seizures and muscle spasms you commonly see. During a seizure the brain neurons may fire as much as 500 times per second, causing an electrical storm in the brain. Muscle spasms are not the only symptom. Sometimes an Epilepsy sufferer will have behavioral problems, feel strange sensations, or have a disruption in their emotions. Epilepsy effects approximately 50 million people worldwide and according to the Epilepsy Foundation of Florida three million people in our country suffer with Epilepsy. Approximately 70-80% of people can control their Epilepsy with medication, in the remaining population of sufferers surgery is the only method of intervention. Some children with Epilepsy eat a Ketogenic Diet, for more information please see your doctor. This does not work with all children and needs to be regulated by a doctor.

Like Autism, Epilepsy exists on a sliding scale. Events vary in severity and are individual in nature. It is important to note that some children will grow out of their Epilepsy. This type of Epilepsy is called "idiopathic-epilepsy" and is usually age related. This condition still needs to be monitored and treated by a physician. There are six main kinds of seizures associated with Epilepsy: tonic, clonic, tonic-clonic, absence, myoclonic, and atonic. 

Tonic: Tonic seizures involve muscle stiffening alone. The major muscle groups of the body, arms, and legs with suddenly stiffen. The sufferer will usually stay conscious during the event. Typically these seizures involve both sides of the brain and are most common during sleep. The typical tonic seizure will last approximately 20 seconds. For more information on tonic seizures please visit this link: 

https://www.epilepsy.com/learn/types-seizures/tonic-seizures

Clonic: Clonic seizures will involve a rapid rate of tightening and relaxing of the muscles, resulting in a jerking movement. These movements cannot be stopped by restraining the sufferer. This condition is rare. These seizures last for a few seconds to approximately one minute in length. For more information see this link: 

https://www.epilepsy.com/learn/types-seizures/clonic-seizures

Tonic-Clonic: These are the most common type of seizure. Also known as gran mal seizures, these seizures cause muscle stiffening followed by jerking. The sufferer may lose consciousness during the event. These events last approximately 1-3 minutes, but a Tonic-Clonic seizure lasting 5 minutes or longer are a medical emergency! For more information on tonic-clonic seizures please read here: 

https://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures

Absence: These seizures are most common in children. They involve lapses in awareness and begin and end abruptly. Sometimes they involve staring. These episodes last only a few seconds and can go for months undetected. These seizures can happen with other seizures or on their own. For more information please see this link: https://www.epilepsy.com/learn/types-seizures/absence-seizures

Myclonic: These seizures are brief, jerk of the muscles, looks like someone is being shocked. This type of seizure will last just a few seconds and may not repeat since multiple muscles will be affected all at once. For more information on myclonic seizures please visit this link:

https://www.epilepsy.com/learn/types-seizures/myoclonic-seizures

Atonic: These seizures are also known as "drop attacks" for the sudden loss of muscle tone. The sufferer will often fall to the ground during an episode, in children only their heads may drop. This type of seizure only lasts approximately 15 seconds and will begin in childhood. Many people with this condition are injured when they fall and some may elect to wear protective helmets. For more information visit this link: 

https://www.epilepsy.com/learn/types-seizures/atonic-seizures

There are other types of Epileptic seizures. For more information on Epileptic seizure types please visit this website: https://www.epilepsy.com/learn/types-seizures

As I mentioned before a seizure does not mean Epilepsy. Seizures are cause for concern and should be diagnosed and treated by a Neurologist. There are four kinds of seizures that are not considered epileptic conditions: first seizures, febrile seizures, non-epileptic events, and eclampsia.

First Seizures: Many people experience at least one seizure over the course of their lives. This is a reaction to anything from medication to an unknown cause. As a universal precaution doctors will order EEG's and testing to ensure the health of an individual who has undergone a seizure. But, first seizure means just that, it was the first seizure. One study followed patients for an average of eight years and found that only 33% will have a second seizure in a span of approximately four years.

Febrile Seizures: These types of seizures will affect children who are sick and run a high fever. In fact the word febrile is Latin for fever. Most children who experience febrile seizures will not develop Epilepsy. In fact there is only a 2-3% chance of developing non-febrile seizures subsequent to a febrile seizure, in an otherwise healthy person.

Non-epileptic Events: Sometimes people will appear to have had a seizure, but their brains will show no signs of seizure activity. This type of seizure may also be known as a pseudo seizure. These events are psychological in origin and may indicate a need for attention, dependence, avoidance of stressful situations, or a psychiatric condition. The people suffering from these events still need help, but not of the medical persuasion. Other non-epileptic events can be caused by conditions like Tourette syndrome, cardiac arrhythmia and other medical conditions. An experienced doctor, through extensive medical testing will be able to assist in diagnosing these medical conditions.


Eclampsia: This is a life threatening condition that may develop in pregnant women. Its symptoms involve sudden, high blood pressure and seizures. This condition needs to be treated in a hospital setting and upon the end of pregnancy the condition disappears. No further seizures will be attributed to this condition as long as the individual is not pregnant. 

If left untreated seizures, over time they can last longer, potentially causing coma or death. Seizures can sometimes cause brain damage, but this occurs over an extremely prolonged period of time. An individual suffering from seizures could experience injuries associated with falling or convulsion trauma. So why are seizures so under addressed in Autism? It’s a scary thought, but a portion of the population does not even know their child is suffering from seizures. The Autism community has named this "Silently Seizing". In fact an Autism mom, Caren Haines, who is a registered nurse, wrote a book titled just that. She talks in depth about her experiences and gives some great information about epilepsy in relation to Autism. In fact she boldly supports the idea that 50% of Autism diagnosis's can be attributed to silent seizure events. These seizures can cause Autistic like behavior. So, I believe part of diagnosing Autism should be tests to rule out seizures as the sole cause for the child's behavior. It is not because testing is very expensive. Seizures are treatable, Autism is not curable. Here is a link to Caren Haines's book, Silently Seizing: http://www.silentlyseizing.com/ 

Was Aiden, my son, tested for epilepsy? Yes, he was tested in February 2014 due to observations I have made in his past and an event his grandmother witnessed. His grandmother is also a nurse. So what did I see? Aiden would be sitting on the floor playing or watching TV. I would call his name and receive no response for a few moments. I attributed this to the typical child behavior, zoning into the TV, until one day when I touch him on the shoulder. Aiden did not respond to his name or my touch, so I waved my hand in front of his face. He did not react, no blinking, talking, moving, nothing. I was understandably very concerned, but I did not know what I was seeing. So I vividly remember quietly sitting down on the floor next to him. A few seconds later he blinked his eyes and looked around. He seemed a little confused, but he smiled at me and continued playing. He was 18 months old when I saw this episode. Confused, I had no idea what it was, so I watched him closely for a few days and never caught it again until he was in his two's.

I asked my mother in law about these events. She informed me it maybe a type of seizure, but she couldn't be sure. A few months later she called me at work and told me I needed to get Aiden into a Neurologist. Aiden was at her house for the day. She had set him up on the computer to watch and listen to some child songs on YouTube. He was sitting in the chair, fine, actively engaged, when he suddenly fell out of the chair. He struggled to stand back up and get back into the chair so much he fell again. This is extremely atypical of Aiden. So we went to a Neurologist. 

The first part of diagnosing Epilepsy is a visit to the doctor and background information. A 30 minute EEG was conducted in the office to try and catch a seizure episode. This proved very unproductive. My then two year old did not want to lie completely still for the 30 minute test. I was not surprised. A video monitored EEG was ordered. To spare you a very long story, we ended up getting a medical grant for the test through the United Healthcare Children's Foundation. I am forever thankful to them for giving us this grant. Without it I would not have been able to get treatment for Aiden, due to the enormous cost of care. 

Be prepared for an EEG, it is a hard process for you and your child. In fact after the EEG we were dealing with behavior problems for about a week afterwards. Why so long? My child was extremely over stimulated by the whole event. This was a necessary evil for us. To perform an EEG the nurse had to attach electrodes to Aiden's head. These electrode's measure and read brainwaves and document them on a graph that reminded me a lot of a heart monitor, but with a lot more lines. To attach the electrodes, first they had to mark their locations on Aiden's head and then apply the glue. After the glue is applied the electrodes are pressed into the glue and tape is applied over the electrodes to help keep them in place. A net is then placed over the whole shebang to keep the wires under control. Part of Aiden's Sensory Processing Disorder involves any and everything touching his head. He hates it and it sends him into an all out fit. This was a fight and a half for me to hold him down. By the end of the process we were both exhausted from the fight. Here are some pictures that may help you understand what the electrodes will look like. 

Our EEG and testing came back with inconclusive results. The doctor cannot tell if Aiden is experiencing seizures because his brain is not fully finished developing. He explained it to me like this. They are seeing brain waves that are not typical of someone with Autism. Autistic individuals have abnormal brainwaves naturally, but these were strange because these brainwaves were not even typical of an Autistic brain. Aiden is three and was three at the time of the testing; a human brain does not finish developing until the child turns four. What the doctor thinks is happening is a delay of myelin formation on the left side of Aiden's Parietal Lobe (that's toward the top, back of the head). This part of the brain controls behaviors, among other things, which could explain why we are seeing such dramatic issues with meltdowns and behavioral problems, as they occur. If you think of a power line, there is a coating that protects the wiring on the lines, think of myelin as that protective coating in the human brain. Without it the electric signals jump around, uncontrolled, which is what the doctor believes we were seeing in the form of a possible seizure. Myelin is more commonly understood in cases involving Multiple Sclerosis, when the body’s immune system attacks the myelin, eventually causing a slew of health problems. Myelin forms in the human brain until the child turns four, causing the brain to double in size from birth to four years of age. Without the completion in Aiden's brain growth the doctor cannot properly diagnose Aiden's condition. So we wait. 

For more information on Epilepsy please visit these sites:

http://www.medicinenet.com/seizure/article.htm

http://www.efof.org/index.php/information

For more information on Childhood Epilepsy please visit this site:

http://kidshealth.org/parent/medical/brain/epilepsy.html

For more information on Epilepsy and Autism here is a good reference:

http://www.autismspeaks.org/family-services/epilepsy

Video about seizure first aid: http://www.doctoroz.com/videos/seizure-first-aid

I hope this has given you not only insight into Epilepsy, but also how Epilepsy and Autism can co-exist. Please seek the guidance and diagnosis of a medical professional if you suspect seizures or Epilepsy in your loved one. 

Sensory Processing Disorder

First thing first, today is Sunday. Let’s all take a moment and pray. If you are not religious take a moment and meditate in silence. Thank your God for the life you do have, remember it can always be or get worse. Be thankful for your family, friends, and beautiful child(ren).

Today I'd like to talk about Sensory Processing Disorder. What it is? What that means and how to tell if your loved one may have this condition. What can you do to help?

In order to understand Sensory Processing Disorder (SPD) you have to understand the five senses. Sight, smell, sound, touch, and taste are all sensory input methods. Your body has two nervous systems at work, the central nervous system (life functions) and peripheral nervous system (the senses). I'm not going to bore you with a lecture on anatomy, this is just the basics, and how I understand them. While you are reading this blog your eyes are sending messages to your brain through electrical impulses. Your brain receives these electrical impulses in the occipital lobe of your brain, located in the back of your head, and turns them into what you recognize as words. It’s amazing how quickly this happens and this is one of the many wonders of the human body. If you receive a bug bite on the arm, the peripheral nervous system sends that information to the brain and the brain alerts the central nervous system to make an appropriate movement, usually in the form of a swat or smack on your arm. Active thought is not necessary to make this movement and that is why you may sometimes swat at a friend playing a trick on you. I am not a medical doctor, so if you have specific questions, in regards to the nervous systems or the human brain, please direct them to a physician. Again this is a basic understanding I have about how this works and it has helped me to understand why SPD is what it is. Here is a link with more information on brain anatomy if you are interested: http://www.bami.us/Neuro/BrainAnatomy.html

An interesting new study just released in January 2014, shared on the Autism Speaks website, published by the Journal of Neuroscience, and conducted by Vanderbilt University, found some children with Autism have trouble simultaneously processing sights and sounds. It’s like watching a foreign moving with English dubbed overtop the film. The mouth movement and sound of the voice don't match up. This finding may explain the delay in social and communication skills in those with Autism. This is hugely beneficial and exciting to hear, not because of the struggles, but because it is one more piece to understanding the Autism puzzle! What does it mean in the meantime and how can we apply this information to our home lives? That is simple. When you ask your Autistic child a question, ask only one and pause for an extended period of time for an answer. Then proceed to the next question. It also could explain why Autistic children answer questions with the last word you say, for instance, would you like water or juice? They answer juice. Ask the question again, but change the ending: Would you like juice or water? They answer water. Instead hold up the options and have the child point to the one they truly want. Here is a link to the article on Autism Speaks, it is coupled with an informational video about the study: http://www.autismspeaks.org/science/science-news/study-suggests-sight-and-sound-out-sync-some-autism

What is Sensory Processing Disorder? Also known as Sensory Integration Disorder, Sensory Processing Disorder (SPD) is the disorganization of sensory signals to the nervous system causing an inappropriate behavioral reaction to the input. That was a really fancy way of saying the individual with SPD cannot appropriately react to the world around them due to the way their brain is receiving the information. I have heard SPD described as a neurological traffic jam, which makes a lot of sense. The brain is receiving more input than it can organize. From the moment you are born, until the moment you die you are receiving sensory input. We are practically bombarded on a daily basis by sensory input. Examples of this are temperature, television, radio, a wide variety of smells, etc. Here is a fantastic exercise to understand SPD. Stare at your computer screen. Focus on the world around you, the sounds. What do you hear? Air conditioner, voices, maybe music or cars. Keep that in mind, notice every change. Now, simultaneously focus on what you feel. Is it hot or cold? Focus on all the sights. Are people moving around you? What do you smell? Did someone have an offensive garlic lunch nearby?

"Typical" people do not notice every part of their environment. We learned from a very young age how to filter out the input we wish to ignore and focus on those we want to. Some people without SPD are more sensitive to certain types of sensory input than others and if exposed to those inputs they will not be able to focus. The most common example is temperature. If you are sitting in a movie theater and it is far too cold for your personal taste, you will not be able to focus on the movie. The explanation for this is simple, you are too cold. You don't have SPD, you're senses are telling you, you need to get warmer. This is a survival mechanism. Individuals with SPD cannot eliminate any of their sensory inputs. Just imagine a grocery store on a Saturday afternoon. Lots of squeaky carts, influxes in temperature (thank-you freezer section), conversation, and bright Florissant lights, that weird sterile smell, and a constant hum of electrical equipment. You as a "typical" person going to the grocery store can eliminate the sounds, smells, and bright lights to focus on your purpose- buy groceries. An individual with SPD cannot. They hear, smell, see, and feel everything.

It took me a long time to understand SPD. My eureka moment came when I went to see a movie, Superman: Man of Steel, released in 2013. The moment took me by complete surprise. I did not go to this movie anticipating having a realization in the world of my son's Autism, I went because I am in love with Superman. There is a particular scene in the movie in which Superman is fighting the bad guy, General Zod. During the fight Zod's armor is damaged and he is exposed to Earth for the first time. He is crippled by all the sensory input flooding his system. That, for me, was my moment. It hit me, "This is what Aiden goes through" I thought, and suddenly I understood. I saw life through my son's eyes and I was forever thankful to the director Zack Snyder for capturing that moment so well. Here is a clip I found of this scene from the movie I describe above:

https://www.youtube.com/watch?v=8KAzRHDdI5o

If left unaddressed the individual suffering with SPD may have motor clumsiness, behavioral problems, anxiety, depression, school failure, and many other impacts on their life. Do not ignore SPD. SPD is lumped into the diagnostic category known as ADD/ADHD. I used to believe ADHD meant undisciplined child. I was terribly wrong. I did not know there were so many different sub-types of ADHD. My son is a very active and easily distracted child, so I thought the diagnosis of ADHD at two years of age was a little odd, isn't every toddler that way? Now I understand the root of the behaviors. More than half of my son's behavioral issues can be attributed to his personal battle with sensory overload, the rest is Autistic behaviors. For more information on SPD please look into the SPD Foundation, here is their link: http://www.spdfoundation.net/about-sensory-processing-disorder.html

If your child is shutting down when a sensory event is happening, address that situation. The child may cover their ears or close their eyes. They may shake or curl up in a ball. Every child reacts based on their individual overload. They may scream or lash out when you try to touch them. Sometimes this feels like it happens often and it will lead to an Autistic meltdown if the child is not removed from the stimulation. Another behavior to look for is self-soothing behaviors, or stiming. Stiming is an action performed by a person to sooth themselves in a stressful situation. My son will grab my hand, put it to his open mouth, and rub his mouth on my skin while saying "ahhhh". It’s odd to picture and you would think he was trying to bite me, but that is his stim. We are working with our ABA to fix this stim.

How do you help? First, if you suspect sensory processing disorder, film it. Take video of an event or a series of events to an Occupational Therapist to determine if your child needs further assessment or treatment. If the event is happening at school, ask the teacher to film it and send you the video. This will help you understand if it is a behavioral problem for the ABA therapist, or determine the need for Occupational Therapy. There are a few things you can do to help ease sensory overload and it starts at home. One of the first sensory items I bought my son was a weighted blanket. He loves it. These items are not cheap and you have to do some math as far as body weight vs blanket weight, but this has helped him with his sleeping. In fact he almost demands the blanket when he's sleeping at home. I got it off Amazon.com from a business called SensaCalm. Here is a link to their website: http://www.sensacalm.com/weighted-blankets/

Choose a heavier lamp shade and dimmer light bulbs; this lessens the impact of bright lighting. Put the child's bedroom in a quiet room; consider adding or updating the insulation in that room to assist with sound and temperature control. Keep your home at a constant temperature, something comfortable. We keep our home between 75-76 F in the summer and in the winter at 77-78 F. That is what is comfortable for our family. If you have a spare room in your home, create a sensory room. A sensory room is a place of total control for the child. It can help exponentially decrease the length of time of meltdowns (addressed in my prior post) and gives the child a feeling of calm.

How do you create a sensory room? First paint the walls and ceiling black. Black absorbs light and color, it does not reflect it. This dims the room. Fill the room with different textures, bean bag chair, fuzzy rug, a black light is fun, a ball pit, one or two stuffed animals, etc. Put chalkboard paint on one wall and provide two or three pieces of chalk (as long as your child does not eat chalk). Here is a link to more great ideas for a sensory room: http://reclaimingthehome.typepad.com/home/2009/01/building-an-autism-sensory-room-on-the-cheap-environment.html

What if you don't have the space or money for a sensory room? Do not fret. A sensory tent, or as I love to hear them called sensory cocoons, are for you. This is a small pop open tent installed in the child’s room. If the child goes in the tent, that is their quiet space. The tent can be put in any room of the house, but the child's bedroom is the most common location. Be sure to pick up a tent that is a non-stimulating color, like red. Blue or black tents are ideal. Put some sensory items in the tent, a book of textures, rain sticks, soft blanket, fluffy pillow and a stuffed animal. Make those items only for the sensory tent, so it may be helpful to have a zipper closure option. Here is a really crafty idea on how to make a sensory tent for much less than you can buy one:

http://speech-specialed.blogspot.com/2012/07/how-to-make-sensory-tent-for-small.html

I hope this has helped you begin to understand SPD and its serious nature. Here is a link to my blog about Autistic Meltdowns: http://aidensheroes.blogspot.com/2014/04/autistic-meltdowns.html

Please feel free to ask any questions on this post or through our Facebook page: https://www.facebook.com/AidensHereos My thoughts and prayers are with you all.

Autistic Meltdowns

I have often felt like I deal with more tantrums than other parents with toddlers. I have said this so many times and one day I finally found out why. It’s two simple words, but say them to the parent of an Autistic child and watch that familiar look of understanding cross their face. An Autistic meltdown is an animal all its own. It’s not a typical temper tantrum. This is the nightmare of tantrums. These can come on suddenly, with what seems to be no warning. I am here to tell you what an Autistic meltdown is. How can I tell the difference between an Autistic meltdown and a "normal" temper tantrum? How do I stop it?

What is an Autistic meltdown? This is the most misunderstood phenomena in Autism, but it is also the most common. An Autistic meltdown is brought on one of two ways. The first way is the most expected, the child does not get what they want. The second is not so simple. When an Autistic child suffers from some kind of sensory overload (such as sudden bright lights, an offensive odor, or loud noise) it can launch them into a seemingly unexpected tantrum. Often time’s parents or caregivers have no idea what has caused the meltdown and understandably so, they are busy dealing with the outside world as well as keeping track of the needs of their child. Meltdowns are not exclusively suffered by Autistic children, they can also be found in other neurological disorders. Imagine the meltdown of a nuclear reactor, that is what is happening in the mind of the child.

A child in the midst of an Autistic meltdown is caught in a constant cycle of frustration, which feeds the behavior of the tantrum. The stimulation overload enters the child’s senses, the child's brain is unable to cope with the input, the child begins to give cues of discomfort, if no change is made the meltdown occurs. The cue can be as subtle as closing their eyes tightly or as major as pulling away and trying to run off. The cue can be repeated multiple times before a meltdown or may only be given once. Cues vary by child and you must figure out what your individual child's cues are. As a parent the first few meltdowns will be very memorable and highly frustrating. It will almost always happen in a public place. You will feel embarrassed, which may cause you to add to the stimuli already overloading your child. Every parent is guilty of yelling at their child and sometimes children need to hear that stern change of voice to understand what they are doing is wrong. An Autistic child in a meltdown will not hear your words; they will only hear the volume change in the world around them.

Pause here for a moment to consider your feelings while reading that last paragraph. You may have just begun to figure out what your child's cues are. Every parent goes through a phase of trial and error. Children do not come with instruction manuals. Please do not beat yourself up for getting frustrated with your child at times. Understanding what is happening with your child will help extend your patience fuse, but it will not eliminate the eventual feelings of frustration and maybe anger. Take a moment to remove yourself from this situation. You will feel like everyone in the world is staring at you, judging you, and I'm sorry to say they are. Why do you care? You were raised in a world of societal rules and norms. Your child was not. Your child will not understand these unwritten rules and all their exceptions.

As a parent of an Autistic child you will begin a curious transformation, you will find yourself breaking societal rules. It’s a liberating feeling. Why do boys need to only have short hair? Why should I smile at total strangers at the mall? Why do I need to continue this ridiculous small talk in the grocery store checkout line? You will find yourself granting societal norms to people on a limited basis and when you do you will think ‘Wow that was nice of me'. This is not rude. This is not inappropriate. It’s honest. You will not be struck by lightning and the world will continue to turn if you do not cut your son’s hair or smile at a passing stranger. I'm not saying you are going to turn into a complete robot, but you will begin to change.

So how do you tell the difference between a meltdown and a tantrum? That is simple. A tantrum will end when the child is offered what they want. Tantrums in Autistic children do occur and they should not be allowed to get away with any of it. Determine an appropriate punishment and be consistent, just like any parent of a "typically developing" child. A meltdown on the other hand will not end, for any reason and will increase in intensity the longer the child stays in that location. A clue to a meltdown could be its seemingly sudden onset. The child has asked for nothing, is seemingly fine one minute and then, all of a sudden, the world is coming to an end. During a meltdown the child or individual will not look at you for feedback. During a tantrum a child will stop and look to see if they have an audience.

What do you do if your child or Autistic loved one is experiencing a meltdown? Stay as calm as possible. A meltdown is like a seizure. You cannot stop it until it is done. If at all possible and most of the time it is, remove the child from the area. You are not doing this for the peace of mind of others; you are doing this to remove the stimulation that is overloading their system. Get them to a safe environment and let them run through the meltdown. If your loved one is an adult with Autism, you will not be able to physically move or remove them from the area. Instead move items they could hurt themselves on. Allow the meltdown to finish its cycle. Child or adult the outcome is the same; you will both be exhausted from the ordeal.

It is very likely police or security will be called by an onlooker, especially if the meltdown is particularly loud or violent in appearance. Do not physically intervene with any police officer, but articulate to them the child or individual is Autistic and is going through an Autistic meltdown. Advise the officers that restraining the child is physically unsafe for the individual and for themselves. Restraining an Autistic individual requires considerations that I will discuss in a different post, but basically this is due to their anatomy. Remember an Autistic child does not know what they are doing during a meltdown. They will not remember if they have hit you. They will not be able to tell you why you are hurt. The event will be very fresh in your mind, so it will be hard to understand how they can have amnesia of the incident. It is not uncommon for the child to be particularly affectionate after an event like these and it is not uncommon for you to feel less than ready to give affection after these events.

I can tell you that as my son has aged, I have learned his cues, and we are experiencing less meltdowns. There is a light at the end of the tunnel. Some parents with moderate to low functioning loved ones teach them to give verbal warnings before the onset of a meltdown. They can feel the changes in their emotions, just like you can, expressing it is difficult. For instance a good verbal warning is: "Help me". This is simple to say, easy to remember, and is easily understood by other people. The verbal warning should be easily understood by others and should not be an odd code word like "panda". If your Autistic child walks up to a police man and says "panda" they will not get the help they need, "help me" elicits a completely different response.

Though you cannot stop an Autistic meltdown, you can try to delay or prevent it. How? Talk to your child. When my son was two he was functioning on the cognitive level of a five year old and was very strong in his vocabulary. I can talk to my son and prepare him for what we are going to do and what he may experience. I can say to him "loud noise" and he knows what to expect. Don't be afraid to say "wow that was loud" or "wow that was bright". Address what they are experiencing so they do not feel alone in the experience. It shows them you understand what they are going through. I may look at you and see you squinting, but an Autistic child does not understand why your face looks scrunched up. Living with Autism almost turns you into a walking comic book strip. You begin to talk out loud a lot about things that invade your senses.

We distract our son with a silly question if he starts to slip into a fussy mood. Aiden usually begins to fuss and becomes visibly disturbed while on his way to a meltdown. We ask "Are you Santa Claus?" or "Is the sky green?" He will usually laugh. Just continue to ask silly questions if you find this works. If your child is drawn to music, try singing to them in a stressful environment. The sound of your voice in a melody maybe enough to distract them, especially if the song is familiar (ABC's, Twinkle Twinkle Little Star, etc) If your child or loved one is verbal, try getting them to sing with you or count with you. Do anything that engages their mind and forces them to think of something else.

For more information on meltdowns vs tantrums please feel free to read this article: http://www.examiner.com/article/autism-meltdowns-versus-temper-tantrums If you find you are unable to curb the meltdowns, despite your best efforts, and they are frequently occurring, please look into other options. Discuss these concerns with your healthcare professionals. One option is a service dog for Autism. These therapy dogs do exist and are wonderful options for Autistic children. Here is a link to one organization that provides therapy dogs for Autism: http://4pawsforability.org/autism-assistance-dog/ If you already have a family dog and do not want to add another do not fear. Your family pet may be able to act as your child or loved one's therapy dog with training. For more information please look into this link: http://www.autismspeaks.org/resource/service-dog-tutor

Autistic meltdowns are terrible the first time around, but they are inevitable. I hope this helps you understand these meltdowns and to realize there is a real reason for why they occur.

As always if you have questions, please feel free to ask here or on our Facebook page: https://www.facebook.com/#!/AidensHereos