Having a non-verbal child is a challenge under most circumstances. I happen to also be “blessed” with a child who refuses to use PECs or sign-language, because he *knows* that the way to communicate is to speak–and wants to do that, even though he can’t speak much due to his disability. As you can imagine, that makes fulfilling his needs even harder. Not to mention making it harder to educate him. For years we struggled with the schools, as they insisted it was our fault he wouldn’t use PECs, even though we tried and would have welcomed an easier way to communicate.

We are very fortunate that over the past few years, Raif has managed to pick up enough words to communicate some of his wants. We have also gotten very good at tailoring “yes or no” questions so he can give us an idea of his desire when he can’t outright tell us. Multiple choice questions also encourage him to “use words” to clarify his preferences. One of the funniest things is his use of canned-phrases to let us know signify his wants. I can’t help but laugh when I ask him if he wants soup, and he’ll answer with “Mmm, mmm, good.” Reminds me a lot of the character from Batteries Not Included. Remember that movie?

Despite advances on the communication front, one thing that has not changed much over the years is Raif’s inability to tell us if he is sick. It’s easy if he is running a fever, or has such severe pain that it’s obvious he’s ill. However, a lot of the time when Raif is sick, we don’t realize it, and more importantly, he doesn’t realize it. I think we have all been there, where we feel off and just can’t really point to what is ailing us. Perhaps a tickle in our throat, or a dull ache. Those are the illnesses that perplex my son, and which cause us a lot of trouble.

After a long period of doing very well in school, Raif became violent the other day. No one could really understand why. After a look-over by the nurse, they noticed his throat was a little red. Pain can make Raif feel off and get aggressive. He wasn’t running a fever or anything, but we decided to take him to the doctor. Turns out he had an infection and was put on antibiotics.

Even with a severe child, I think we still take it for granted that if your child is sick, he/she will let you know. Even for Raif, if he is in a lot of pain, will come and take our hand, placing it on his ear or other place it hurts. General illnesses, and even things that are overtly painful like a sore throat, are abstract and perplexing to our son. There are times we’ve suspected he’s suffered weeks without us knowing, until the illness (or his aggression) go so pronounced it was obvious something was wrong.

When we told Raif that he was going to the doctor, he was happy, and then proceeded to coughing hard and moan. He continued this over-exaggeration the whole day and through his visit at the doctors, even though everyone kept reassuring him he didn’t have to act sick for the doctor to see him. It wasn’t until after the fact that I realized in Raif’s head, *that* is what he equates illness with. Even if he feels bad, if he does not see those physical symptoms in himself, he may not realize he is truly sick–despite the fact he feels bad enough that it comes out in the form of marked aggressiveness.

Thankfully, the doctor and nurses were really good about the whole situation. We got Raif into see the doctor quickly, piggybacking on an existing appointment we had for two of our daughters to get a check-ups. Again, in Raif’s mind, he saw his siblings getting shots and immediately felt he needed a shot. In fact he got so worked up about it, he pinched himself in the arm when he didn’t get one. He was consoled when the nurse gave him a band-aid that matched his sisters’.

I hope one day Raif will be able to tell when he is sick, and let us know, even if it is him simply saying “sick.” Until then, it just adds another role of “medical detective” to our resume as we have to look out on our own for the signs when he is not feeling well. Which is not as easy as it sounds, because our son is smart enough to know how to FAKE being sick, even if he isn’t so astute to always know when he is truly ill.

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I’m a normal person. In special-needs speak, I am NT, which means “neurologically typical.”  It means that I am like the majority of the population, a person whose brain works in the traditional manner.  I am married, however, to someone who is ASD. More special-needs jargon. That means “autism spectrum disorder.”  In years past, autism was pretty much relegated to the type of person that Dustin Hoffman portrayed in the movie Rainman.  I have to admit that my only exposure to autism prior to adulthood was a child who was the son of my father’s employee.  I remember he had the odd distinction of eating loaf after loaf of bread by taking one bite out of the center of each piece and throwing the rest away. Nowadays, it is known that autism covers a wider area, and there is a greater umbrella over the people who can be classified as autistic.

My husband is an “aspie.” He has never been formally diagnosed, but in the path to discovery of my son’s issues, Jim found answers to many of the mysteries of his own life.  When researching autism for our son, Jim saw himself and gained clarity.  It was emotional, but something that liberated him, and quite frankly shored up our marriage as I was better able to understand the intricacies of my husband’s behavior–some of which were, quite frankly, driving me crazy!

My son, Raphael (whom we call Raif–which is pronounced like the name “Ray” with an f at the end), is a full-blown, low-functioning, severely autistic individual.  He is 11 and on the mental level of a 3 year old.  Speech-wise, he probably comes in around 2 years old.  He didn’t potty-train until he was 8.  He speaks very little, and it’s rarely social, mostly just to communicate his wants and needs.  He will express concern and empathy, but that’s a relatively new thing for him.  He is content to spend hours doing one thing or another, and if his needs were met in some other fashion, he might go days without human contact and never notice.  Autism for him is not a mere hinderance, it is a debilitating thing that controls his life.

There has been a lot of talk in recent years about people embracing their autism.  Temple Grandin, a renowned animal behavioralist and autistic herself, makes it clear that she feels that autism has its place in the world.  High-functioning autism, that is.  The Aspies of the world are generally the engineers, the scientists, the computer programmers.  While those people struggle, they are still able to function.  Many of those people don’t like the label of “disabled” because they don’t feel they are.  In fact, like my husband, many of these people never realized anything was “wrong” with them until recent years when awareness of ASD grew.  There is the idea that trying to fix something that appears broken is not necessarily the right thing to do, because maybe it’s working fine afterall.  Grandin acknowledges, however, that all autism is not good.  Research must be done, and a cure found for the severe cases.  However, there needs to be a line drawn and a distinction made as to what constitute disabled, and what is merely being different.

I sometimes feel trapped in this world of autism.  I live with it day to day.  I can see the points of view of both sides.  I love my husband, and know deep down that much of his mathematical and computer brilliance comes from the way his brain is hard-wired.  I’m not so sure he’d be quite where he was if he didn’t have Asperger’s.  On the other hand, I also see him struggle with social situations and other aspect of daily life that I take for granted.  Would he trade one for the other?  That’s a tough call, but it’s one that he would have the luxury of making since either way would not greatly impair him.

Yet with my son, I would readily erradicate autism in a heartbeat.  To have a conversation with him, to have him function, to see him doing what other 11 year olds his age are doing would be far worth it. I know that without it he would be a bright, loving child. I am sure if I gave him a choice, if he could understand, he would choose that path too. Freedom from autism.

Either way, I am resigned to the fact that autism is a part of our life and will remain so.   I have accepted that learning to live with autism is what we must do. Acceptance doesn’t equate giving up, as some would argue.  It means that you commit yourself to doing the best with what you have.  It’s not always easy.  Heck, most of the time it’s not easy.  But sometimes it’s all you can do.

So where does that leave me?  With my husband, I embrace autism.  With my son, I detest it and strive to defeat it. There are no easy answers, and I have to wonder if the world was so much better off widening the umbrella.  Has it taken attention away from the severe cases who need to be the focus, and instead placed that light on those who don’t need it or want it?  I don’t know.  Either way, I’m stuck in the middle, which is never really a good place to be.