Autism: Sharing the diagnosis

The first time that we had to tell our families about Autism it was when my son was diagnosed at 3 years old. We had some growing concerns for approximately two years as he lost his speech, he was lining up toys, he was beginning to have mood swings, etc. Since I am also a teacher, one of the first comments my father came up with was: "You are a teacher! You teach the children of strangers how to read and write, but you can't teach your own child how to speak! Spend time with him! Do your job as a mother!" You can only imagine my despair with such a response.

Then, there was my mother who did not do much better: "There is no Autism on our side of our family! It must come from his side of the family! It is their fault, not ours!"

Of course, after I told both of my parents that Autism Spectrum Disorder was not present on either side, other comments followed, making it even worse!

Another challenge my husband soon discovered following the Autism diagnosis for our children was explaining ASD to strangers. You see, Autism is not obvious as a child does not have physical traits, is not trembling or is not displaying tics like it is the case in some medical conditions. The problem occurs when hypersensitive issues or unusual behaviors are displayed in public. At first, the parents are judged on their parenting skills. Once you say that your children have Autism, some parents will rush away from you with their children in tow as if I would have told them it was the Plague or something infectious. Others will offer pity, which is not needed nor appreciated as I love my children as they are, no matter what challenges are ahead of us.

I have noticed that the best way to explain Autism to others is to use the following example: "Imagine that you are in a foreign country. You do not know the language and you need to ask directions. Not an easy task! Frustration and distress soon overcome you!" Another example that I use to explain the hypersensitive issues is: "Imagine that you are told that you must wear an itchy wool sweater all day. Wouldn't you feel overwhelmed by various emotions?" While these comparisons often help in explaining Autism to others, some will continue to avoid your children and isolate them from their own children.

A few weeks prior to my son's third birthday and five months before being officially diagnosed with Autism Spectrum Disorder, I spent an afternoon at the pool with my son. He loved swimming in the big pool. That afternoon, he unfortunately was bullied in my presence on two occasions.

The first one occurred when two boys approximately 10 or 11 years of age were hitting each other with a towel, by the side of the pool. My son started to get excited by the situation and was flapping his hands, giggling with joy. As the boy moved close to my son, the mother of the older boy told him to move away as he was about to hit my son with his towel. His reply crushed my heart while it wiped my son's smile off his little face: "Why should I bother over a retarded kid?" While I cuddled my son in my arms, I was praying for his mother to do or say something. Unfortunately, my prayers were unanswered. I couldn't believe that she would let her 10 years old son bully a 3 years old little boy without even pausing in her conversation with a friend.

Later, I was holding my son in my arms while walking around in the big pool when a boy and his friends starting to imitate my son's flapping and make fun of him. That time, I had to intervene and stop the madness by commenting on his actions toward my son. The boys were shocked but stopped, which I was thankful for. My son's special day out was overshadowed by bullying, and I could not do anything to change that. His pleasure was tainted with sadness.

To this day, I am not sure how much of these bullying events my son understood but all I know is that his reactions told me he did understand some of it and to me, this was intolerable. It broke my heart but what scares me the most is that because he is non-verbal, he will not only become the victim of bullying as time passes, and he is unable to defend himself with others or even ask for help. I know that my husband and I will not always be able to protect him 100% against those bullies, but it doesn't make any easier to accept or live with.

One of the challenges that presented itself with my son was an intestinal problem. Of course, my husband and I decided to address these concerns by visiting the emergency room at the Children's Hospital in our city. After all, the issue was quite serious and the Health Line suggested to us to do that. While I was in the waiting room with my son, I explained to the registration clerk that if my son suddenly became distressed it was because patience was a challenge in itself for autistic children. Fortunately, there was a large aquarium in the room which my son focused on, avoiding a difficult waiting period.

When the doctor saw us, the first thing that she said was: "By the way, I think it is unacceptable that you expect your son to be first in line because he has Autism. Stop using that as an excuse to get some privileges!" I was almost in tears and shocked! After all, we were the only ones in the waiting room the whole time! As I was trying to explain to her that it was not the reason behind my statement, she cut me off by telling me: "I don't know much about THESE children! Few people do!"

As years went by, I realized that underneath those harsh comments, was unfortunately an ugly truth. Few physicians consider themselves well informed about Autism, which means they are also limited in the help they can offer your child and the assistance they can offer you as parents.

While Hollywood created a masterpiece for the silver screen called: "Rain Man", they forgot to mention that it was based on the story of an autistic savant, not the average person living with Autism. In fact, it represents no more than 5% of the people diagnosed with this disorder. Unfortunately, most people make the link between the movie and reality.

This link was mentioned in one of the comments my brother made to me when I informed him that my son has ASD: "So he's like a little Rain Man! Cool!" Little did he know that my son's reality had no resemblance to Dustin Hoffman's character in the movie. In fact, he realized it first hand last summer when he had to travel our way due to a health crisis with my father during his trip in my part of the world. He then made the comment: "I'm sorry that I made that comment about "Rain Man" and your son. Now that I see both your children living with Autism in their own special way, I realize how wrong I was. Now that I have seen them and witnessed a few of their challenges, I have a better understanding of what Autism means for all of you."

Little did he know that his last comment became the fuel to a new beginning as I knew that instead of judging a situation he was now offering an open mind and is developing his awareness about Autism by reading about it and doing some research on his own.

Most people have the best intentions in the world, especially when it concerns their loved ones. Well, my advice to these people would be: "Until you walk a mile in someone's shoes, you can't possibly know what they are going through." The best way to help someone who lives with Autism is to be there for them at all times. Sometimes, simply listening is the best way to help. Other times, offering a hand or some assistance is the best support you can offer.

Both my children are affected by Autism Spectrum Disorder. Both face different challenges and issues. Both, live Autism in a different way. Either way, judging them and offering advice thinking the parents have not already tried a million things to meet the special needs of their children is simply WRONG.

In our case, my parents were the ones providing an increasing amount of advice, regardless of my answers stating that these things were tried in the past and that while some succeeded, others failed. Instead of hearing comments such as: " Did you try this? Try that! You are not tough enough to see it through. You are the parent, act like one! Maybe you should put your son in an institution, since they are trained to deal with people like him! He shouldn't be in a normal school. Train him better!" I could go on for pages! I cried many tears over the years. At one time I even had to tell my mother: "If you can't love my son as he is, this will be our last conversation. Make a choice!"

As the years passed, both of our families have come to terms with the fact that Autism is part of our lives, and it will be like that forever. Although our conversations are much tamer than before, comments are still sneaking into some of our conversations. I dream of the day when Autism will be well known and respected rather than judged and degraded.

When I look back, I see more than the pain, the rejection, the accusations and the hurtful comments. I see that sharing with others about the Autism diagnosis of my children was not an easy task but a necessary one. What did I learn from this?

I learned that it is important to talk about it to people in order to provide information and develop their awareness about Autism Spectrum Disorder. I also realized that behind the well intentioned advice, the hurtful comments, the rejection and the accusations the real message from our family was: "I am sorry! I feel unable to face this diagnosis right now. I wish I could help you! If I could take the blame to make it all better, I would, but I feel like I am not at fault on this one!"

The most important lessons that I was taught through this ordeal were:

- Nobody is to blame, Autism simply occurs in some cases and the causes are mostly unknown and unproven. The only certainty that my husband and I were offered in this case was that one child having Autism is random but having two is genetic.

- People react differently and in some cases harshly when they feel at loss or when facing a difficult situation. They don't mean any harm!

- The lack of knowledge about Autism may be the source of bullying, ostracizing and other cruel actions and reactions.

- Good or bad advice is always given with the best intentions.

The most important lesson of all is that love, patience are the best tools someone can offer your children and your family. Judgments and pity are nothing less then thorns in your side. If you know someone living with Autism, offer them tools...not thorns.