Emerson is getting the word out and folks are catching on.  Check out this article on Marraige and Emerson’s family on CNN.  Check out more discussions from Emerson on our blog.

http://www.cnn.com/2010/HEALTH/05/19/autism.divorce.rates/index.html?iref=allsearch

I have a beautiful four and a half year old boy with autism.  In our case he showed signs since birth, but was not diagnosed until after the age of two, after his initial MMR vaccine.  After so much angst, expense, tears and most of all, effort we were making progress towards healing him. Our son Emerson, “Little Em” was finally starting to say words and look us in the eyes, then came time for his MMR booster shot.  We were sick to our stomachs wondering if this booster would cause regression and thwart all our efforts. The vision of injecting him with something that could hurt him further literally brought tears to my eyes. After much research I found a few things out about the MMR “booster” and what our rights are in the State of New Jersey.

First, the MMR booster is not a booster at all.  The initial vaccine inoculates approximately 94 to 95% of the population receiving it. The booster is later administered across the board to simply increase the percentage up a few points to about 97 to 98%.  So out of 100 children who initially receive the MMR, about 95 already have enough antibodies and do not require the follow up shot.  Secondly, you are allowed to get what’s known as a titer test. This is a blood test to measure the amount of antibodies in the blood stream.  If they are high enough, your child is exonerated from the follow up MMR vaccine.  All day care facilities and schools must accept this and cannot prevent your child from attending if your child passes the required antibody levels on the titer.

Don’t Be Surprised If Doctors Are Resistant.

In our case we waited until we were in the doctor’s office to receive the booster when I notified the nurse who came in with the vaccine that we wanted a script for a titer.  She became quite flustered and insisted that the booster was required.  I calmly requested to meet with the doctor.  He complied without hesitation, but what I find so disturbing is even with the knowledge of my son’s condition, I still had to garner this information elsewhere.  Long story short, my son’s antibodies were high enough and he did not require the booster.  I can’t say that vaccines had any ill effect Little Em, but after all we have been going through we didn’t want to risk anything.

Because of Little Em’s autism we meet so many other parents in the same situation, with the same pit in their stomach when it comes time for booster shots, but to my surprise they don’t know of the titer. Why isn’t this common knowledge?  With all the concern over vaccines how come school authorities and doctors don’t advertize this choice? Sadly I think it’s part economics, and part that the public is used to lining up like lemmings when it comes to doctor’s orders (imagine how much less money the Pharma companies would make if 95% of the population didn’t get their booster shots because they didn’t need it.)

The titer test is available for the following vaccines:

• MMR (measles, mumps, rubella)
• Hepatitis B
• Diphtheria, Tetanus
• H. Influenza (HiB)
• Hepatitis A
• Chicken Pox, (Varicella – zoster)
• Influenza A and B
• Polio
• Pneumococcal vaccines

So if you’re up at night worried about an upcoming vaccine shot for your child, research your state laws and see if a titer test is available.  And spread the word.  With autism now affecting 1 in 100 children, (1 in 66 if it’s a boy) everyone now knows someone who affected by this condition.  Who knows, at the very least you may help save another parent from that awful pit in their stomach.

Let me introduce myself. I’m Emerson Donnell. Born and raised in New Jersey I waited until my 40’s to have a child. Little did I know I was a perfect match, a statistical poster of the typical parent who sires an autistic child, (an older white male living in New Jersey, the state with the highest incidence of autism.) And little did I know after the birth of my son Emerson that my wife Jen and I were being railroaded right into the next widely accepted statistic. Supposedly over 80% of marriages that sire an autistic child end in divorce. Some even say it’s more like 85%. First I wanted to verify if it was true, but in my research I could not validate this “statistic.” However, after being force fed into autism’s meat grinder of financial distress, anger, frustration and heartbreak I don’t doubt it for a second.
When Little Emerson was first diagnosed this specter of collateral damage was relegated as not only unavoidable but something my wife and I simply had to surrender to. I remember wondering why wasn’t anyone addressing this? What’s going wrong and where are the books to help families hold it together? When too many soldiers die on a battle field the commanders and strategists don’t just shrug their shoulders and say “oh well.” No, they sit down, figure out what’s going wrong and set plans to prevent it from happening again.
Now there are many reasons why families divorce even when nothing so tragic happens, but one glaring cause seemed to be revealed from recent research. And I can attest to the findings because I was living this very experience. Recent studies from the University of Florida found most families fall apart because Dads check out. Furthermore, it wasn’t due to the fact his child was autistic, it was how autism was affecting his relationship with the child. They couldn’t connect. It’s not that dads didn’t want to connect, it was that they didn’t know how.
Here’s my personal example of how the nuclear family stricken with autism can suddenly disintegrate. As most dads, I had warm Christmas like visions of my son running to my arms when coming home from a hard day’s work. But every night when I came through the door my hands were left empty. My son was deaf, blind and emotionless to my arrival. There was no response whatsoever. His indifference crushed my very foundation of fatherhood. Autism is so insidious, it can seep into the family fabric and begin to tear it apart before you even realize it’s there. After his diagnosis, I discovered this was very typical of an autistic child, but it still didn’t lessen the pain. Night after night I came home, got into my son’s face and vied for his attention. Inside I begged for some response, anything, a quick glimpse back or maybe even a smile, but each night was the same. I couldn’t rip him out of his thousand mile stare. I was lost. After another night of irrelevance, I remember tossing my car keys on the counter and cursing under my breath. My evening was ruined again and my behavior was about set the whole house into another emotional tailspin. Despite my best efforts, I couldn’t help but become more detached as hopelessness and depression set in. It’s not that I didn’t want to connect with my son, it was that I didn’t know how. I was becoming overwhelmed, I wanted to “fix” the situation, but had no idea how to go about it.
A father wanting to connect with his child for his own fulfillment may sound like a selfish endeavor, that he’s not thinking of the child’s best interests. But on the contrary. Creating bonds and developing proper emotional responses to a parent may be arguably the most important therapy a child can receive. Recent studies found that when a father learned to connect with his child and “stay in the game” the child’s vocabulary typically increased by over 50%! Furthermore, developing affectionate behaviors early on can help break through the gray shell of autism and bring out the colorful humanity hidden within these children. As a wonderful side effect, learning to connect will help weave the family fabric back together.
This all sounds great, but if you’re a parent struggling with this very problem, I imagine your thinking, so where do I begin? There are so many areas to work on but let’s get down to the nitty-gritty, and revisit the above scenario of family greetings.

Coming home at the end of the day and trying to get into your child’s face in the hope of a reaction is basically a formula for failure. It may not sound very fun, but being calculating and pragmatic is the best approach. The goal here is to get your child out of his world and for your arrival and presence to be relevant to him.

As with any other ABA program you may have to first physically prompt him, but the key is to get the child physically involved in the greeting process. 1. Call your spouse ahead of time so he or she can prepare the environment. Turn the TV off, get any food or drink out of the child’s hands. Start to talk about “Daddy coming home,” and physically get him facing the door. By doing this you are narrowing down distractions and setting up the environment. Dads (or Mom – whomever is coming home) should not simply walk through the door, but knock on the door, call his child’s name. If the child does not respond, mom should help the child walk to the door, physically prompt him to open the door if necessary. (Do not just pick up the child or open the door for them. The goal is to get them involved and participating). Dad should be bent down at his level and come in with a hug. 

As a major note, do not expect this to all go smoothly. To put it lightly pulling an autistic child out of his comfort zone to participate in normal affectionate behaviors can be a battle of wills. Expect melt downs, flopping and resistance, but this is unfortunately a natural process of acclimating autistic children to our world. One day may not better than the last, but chances are you will begin to see progress through weeks and months.  Also, like other ABA regimens, developing this behavioral habit of coming to the door at the sound of a parent’s voice, opening it and embracing will be infinitely easier to ingrain when they are younger. Autistic children are known for developing “habits” and creating these specific types of habits can have profound positive effects. Though they may not have the capacity to understand the intrinsic good feeling of an embrace, I have found it can be taught and may blossom back in ways never imagined.  Finally getting your child to independently run to the door at the sound of your voice will be priceless.  This is the stuff that keeps families together working for more.

You may find more information on developing proper emotional behaviors and affection in autistic children in the new book: Dads And Autism, How To Stay In The Game, by Emerson Donnell. It is available on Amazon or directly from www.dadsandautism.com

Every child’s autism is different and unique, however, there are also many common traits. One of the most frustrating and dangerous is what I call the deaf run. This is where the child will bolt from a parent’s hand for some desired object. Normal children do this as well, however, many autistic children are particularly talented at ignoring their parents. They also may be quite fixated on a particular item or object which acts as a terrible distraction when attempting a therapy session. For instance I remember seeing a four year old bolt from his chair to go push a spring loaded door open so he could watch it automatically shut. The therapist repeatedly chased him down, took him by the arm and brought him back to the desk in an attempt to get the child reengaged at the task at hand. Of course the child resisted, flopped and whined making the time spent on therapy little more than a complete waste of time. I saw this as a terribly missed opportunity.

Personally I remember my son, Emerson, bolting from my hands to run for a small creek behind our house. He loved it down there and I provided every opportunity to go. Problem was he got so excited he would simply run and leave me in the dust.  I had to perpetually chase him down and try to reign him in, but nothing seemed to work. I wanted so desperately to connect, but I had no idea how to go about it. 

Most any parent of an autistic child can tell a similar heartbreaking story of  how their child runs off, ignores their attempts of eye contact or any acknowledgement of their voice. So why not use this object of desire to connect, incite eye contact, develop speech and get a little joy all at once? Here’s how. 

Let’s take the incident of the little boy running for the spring loaded door. Imagine the therapist engaging with the boy’s desire instead of repeatedly trying to redirect him. By turning him toward the door, bending down and getting her face up into his, she asks if he wants to “go?” Depending on the child’s verbal ability this can be expanded on. If you are just inciting speech, this is a great opportunity to have their undivided attention to learn how to request for something.  Teaching a child a word like “go” involves action on their part and attempting to incite speech on something that is so desired and relevant to them will typically be much easier. The child will most likely be looking right through you towards the desired object, but guess what, now you’re becoming naturally integrated into their world.  If they can’t talk, perhaps you may get them to point or even partially speak. One other thing I did with Emerson was to verbally count down with my fingers in front of his face, “one, two three!” before bolting towards the creek.  It took some time, but after repeated exercises, his little fingers began to move as he was attempting to count.  Here’s a trick, once you say “go!” run backwards and watch the joy on their face as they bolt free towards the desired object. At three years old it was perhaps the first time I saw a wide smile and lucid glimpse from my son’s beautiful blue eyes.

For the therapist, this exercise can be repeatedly done as a game of sorts, each time bending down, counting down, getting the child to communicate in some way their desire to go toward the object. And each bolt for the door will be met with giggles and laughs instead of a firm grips and words to redirect them back.

Sometimes the best therapy involves the use of  things you never imagined like the spring loaded door. But at the end of the day, developing that happy connection can be arguably the most important therapy of all. Developing that connection cracks open those ever so small windows for communication and makes way for other more formal therapies.    

Contributed by Emerson B. Donnell III, Author of Dads And Autism, How To Stay In The Game.  For more tips and more in-depth discussions on how to connect with your autistic child, the book is available on Amazon and www.dadsandautism.com.