Pardon Me While I Get Philosophical for a Moment

Is Autism a Disease or a State of Being?

This question goes through my mind daily as I watch my son go from functioning well in the world to falling completely apart in minutes, incapable of dealing with the slightest detour from his idea of the way things should be. While I do accept who he is and how he is, I can't help but wonder if he is comfortable in his skin. If a cure could make him a typical kid, would he want to change?

There are adult Aspie's in the world who do not want to be cured. They are self-reliant, successful, and comfortable with who they are. They worked damn hard to get there, too, most likely with the support of parents, extended family, and a school system that wanted to help them achieve their full potential. I applaud them. I believe we are providing that type of environment for Ian. Hopefully, one day he will see his differences as assets, even though now they are challenges, not just for him, but for our entire family.

Today, however, I am ready for a cure. This afternoon Ian freaked when the weather changed. Thunder and lightening scared the b'jesus out of him and he hid in his room. Everything I did or said to help him rationalize the situation just made it worse. So I left him alone. Later, when I returned to his room he was so angry with me, he said he was thinking about killing me. Death by fireball was his plan. Yep - he was going to burn me up by throwing fireballs at me. Then he realized that the fireballs would burn him too, so he decided not to do it. I also mentioned that at the tender age of 7, he has no job or money, doesn't know how to cook, can't operate the washing machine, and can't drive a car. He needs me for these things at the very least, and it would be in his best interest to keep me around a while longer. While I enjoy the intellectual challenge his ideas present, I would prefer if they were not centered on my demise.

On days like today, I see Asperger's as a mental illness, needing treatment through medication and therapy. Few people would argue in favor of children harboring delusions of killing their parents. Although this idea is probably fleeting, still I am troubled that my child would even allow such a thought to enter his mind. This to me is a sign that something is terribly wrong.

Is being autistic similar to having cancer? Yes, it makes life difficult sometimes. It may even be debilitating, preventing many autistics from being able to function socially in a productive way. It paralyzes the family. It emotionally bankrupts everyone who cares for the autistic person on a daily basis, especially when symptoms become worse instead of better. While it is not fatal by definition, the anxiety and depression that accompany it most certainly can be deadly. Is it fair to treat only the symptoms of these co-morbidities rather than look for a cure for the underlying cause? Cancer patients would be furious if society suggested palliative care as the only treatment their disease.

Is autism comparable to Alzheimer's Disease? For ages dementia has been relatively ignored because it was assumed that diminished lucidity was part of growing older. The body of evidence refuting that belief has grown considerably since Baby Boomers have experienced aging not only for themselves, but also as caregivers of their elderly parents. Trends show an increase in the rate of Alzheimer's each year that one lives past 80. In the last decade or so, medicines have been created to slow or stop the progression of Alzheimer's. A cure is unavailable because the cause remains unknown, and it will stay a mystery until more Boomers are afflicted themselves. I speculate it is the same for autism. The numbers of the afflicted and diagnosed have risen so dramatically in recent years, that it is impossible to ignore what is happening.

Perhaps autism is more like having small breasts or crooked teeth. Everyone is different. Some are gifted in certain areas that are highly valued by society (with good looks, charming personalities, and/or perky boobs). Those who are not pleased with their attributes can often change them. So why not have a vaccine (oops, I forgot that's a naughty word in our circles), surgical procedure, or pill that can help autistics fit in socially? Enable them to conform to society's expectations of what is normal. Wouldn't that be easier and less expensive than having to retrain autistics to behave in a way that is inconsistent with the way their wiring causes them to behave?

Or, does our society need to become more accepting of differences? Schools, companies, even governments have jumped on the diversity bandwagon. We go to seminars, meetings, form committees and commissions, write policies and procedures and educate the masses that differences must be tolerated. There are debates and law suits about whether people should be treated the same or receive special benefits because of their differences. But is anyone really buying it? We have put a new label on civil rights and tried to phrase legislation to protect everyone who needs protecting, but do people actually believe in their hearts that being different is o.k.? Ian's elementary school has a strict policy against bullying. Yet, he still feels he needs big friends to protect him from those who see him as a target and seek to humiliate or harm him. Will the cool kid who laughs at my son's quirks or takes advantage of his naivete today really be willing to work side-by-side with him when they are adults? It is difficult to say how things will be 20 years from now, but as a mother I am skeptical. Policies may curb some intolerant behavior, but they don't necessarily change beliefs.

In his book Born on a Blue Day, Daniel Tammet tells how he avoided being bullied. When someone would pick on him, he ignored them because he just was not interested in what they were saying to him. He tended to ignore his peers anyway, just because being social was too difficult. The bullies lost interest in bothering him because they never got a reaction from him. My parents taught me to ignore kids who made fun of me because I was chubby, but it was almost impossible for me to ignore someone who was obviously so wrong to judge me by my body shape. Only once did I fight back physically; the other times it was a war of wits and words - and I always felt vindicated because I could put bullies in their places by identifying their own insecurities and zooming in. I don't think Ian is able to manage his anger in a way that makes him capable of doing this, at least not now. I want him to feel comfortable with and confident in himself so that bullies won't have as much ammunition to use against him. Unfortunately, he knows he is different and he isn't very happy about it.

It takes years, even decades for some people, to develop a self-assured attitude that others can sense. For an Aspie, this takes precious time away from concentrating on the passions that interest him. Feelings, because they are so difficult to deal with and understand, are not worth the effort. It is easier to become an expert at something concrete and not bother with the intricacies that make relating to other people a pleasurable experience. Intuitive observation is something I enjoy. Doing Calculus problems makes my chest hurt and my eyes bulge. Without a mixture of both kinds of experts - and everyone in between - life would be pretty dull.

Even though people all through the autism spectrum have strengths that make them unique, it is still extremely difficult for them to get through a day as we know it. Shouldn't we look for new ways to make life better? I have always believed that you cannot solve a problem until you know its cause. Until then, you only deal with symptoms. If research one day finds the causes of autism, then a true cure may be possible. Trying to cure it now is putting the cart before the horse.

If a cure is one day found, it will be Ian's choice whether or not to try it. Only he will be able to decide if he is willing and able to cope with the dramatic changes that may mean for him. What if he chooses not to be cured? Will there be a stigma associated with wanting to remain different?

After 31 years of needing glasses, with a prescription that worsened each year, I decided to have LASIK. The change was amazing. It was life-altering. There have been no negatives. Being able to see the alarm clock in the morning is the first advantage I experienced. Knowing I could confidently ascend the enormous flight of stairs to my children's bedrooms quickly and safely in the middle of the night has given me peace of mind. Having the confidence to drive after dark for the first time in 2 decades has meant security. A "simple" 10 minute outpatient procedure has improved my life in uncountable ways. Yet, I agonized over the decision to try it for fear that it wouldn't work or worse, that I would go blind if something went wrong. Now that I have 20/20 vision, I encourage others to try it. I often joke with my parents about their fears of the procedure. They get along fine with their glasses and are in no hurry to change what they have grown comfortable with. Will there come a time when society persecutes those who accept their own imperfections?

History has proven that the human race is very judgmental when it comes to differences. I can understand why many in the autism community are afraid that finding a cure for autism will mean persecution of those who choose not to be cured. They claim that babies will be aborted if parents learn their unborn child is afflicted. That may be true. People have aborted fetuses with Down's Syndrome. Many have not. Others have aborted daughters when they wanted sons. Most do not. The Slippery Slope argument is a desperate attempt to frighten people from examining the truth: not everyone wants to remain autistic for the duration of their lives.

Am I selfish for wanting my son to be happy and well-adjusted and functional? Perhaps. If I had known what we were facing when I was pregnant, I do not believe I would have terminated it. I wanted to be a parent, no matter what. I was in love with Ian the day he was conceived and have been more so every day since. If curing his autism will give him the life he wants, whatever that is, I would offer him that option in a heartbeat. But the choice will have to be his.

The picture at the top of this post is a watercolor painting, "The Autism Puzzle", painted by Carla Graham.

What Does GFCI Have to Do with Teeth Brushing?

I thought it was odd when I checked my cell phone charge this evening and found that, although it had been plugged in for over an hour, it still only had 2 bars. I mentioned this to Steve, whose response was that my phone must be messed up. No time to worry about it then. Dinner needed to be fixed so two very tired children could get to bed early.

We spent three hours at the pool this afternoon. Despite very chilly water, Ian and Ainsley swam the entire time. Their bodies were like ice cubes when they finally climbed out of the pool. Ainsley wanted ice cream, Ian wanted hot cocoa. After the short drive home, we stripped them out of their swim suites and sent them upstairs to get dressed. Ainsley reappeared quickly; Ian chose to stay in his room.

A long silence is usually an indicator of something strange occurring. Often it is something the perpetrator knows is against our rules or is at least questionable. Realizing it was extremely quiet upstairs, I took Ian his afternoon dose of Ritalin and found him naked on his bathroom floor, playing with tub toys. Not really a big deal, so I just reminded him to get dressed. Eventually, he did.

I resumed cooking. Steve worked in the office, and Ainsley rested, snacked, and watched some t.v. We had dinner, cleared the dishes, and took the kiddos upstairs to get ready for bed. That was when Steve noticed the mat in the jack-and-jill-bathroom was soaked. Hmmmmmmmmm.

"Ian, what were you doing in here?" he asked.

"Nothing. I mean, I was playing with my toys," Ian replied.

"How did the rug get wet?" Steve inquired.

"From the sink. I wanted to stay cool," was Ian's answer.

Steve and I looked at each other, examined the distance from the sink on Ian's side of the bathroom to the mat next to the tub, and wondered how that was possible. Both of us were relieved that the water had not come from the toilet. Ewwwwwwww! Steve rolled up the mat and took it to the laundry room while I attempted to help Ian get ready for bed.

Ian walked over to his sink and began looking for his toothbrush and toothpaste. The toothbrush was on the floor, next to his right foot, and it took him several minutes to locate it. As I thumbed through the book he had selected as his bed time story (Strega Nona by Tommie dePaola - a wonderful story!), I heard a sloshing sound coming from Ian's direction. I thought he had filled the sink and was playing in the water. When I looked up, Ian was playing in water alright, but it was inside the drawer to the left of the sink!

"What on earth???" I exclaimed as I ran to his side. The drawer was overflowing! Then I opened the drawer on the other side. It, too, was filled with water. Again, Steve and I exchanged confused glances.

"Ian, how did this happen?" we asked our son.

"I don't remember," his standard reply.

We opened the cabinet under the sink and found it filled with water as well. Strangely, there did not appear to be a plumbing leak in any of the pipes. And since the sink does not have an overflow hole, we could not figure out how the water had gotten in these unusual places.

Finally, as we were finishing soaking up the water with towels, Ian admitted that he had tried to take a bath in the sink. But that still did not accurately explain how the water got into the drawers, unless he had them open while he was in the sink. The ground fault circuit interruptor must have received some of the moisture, which threw the circuit breaker for all the bathroom plugs. That explained why my cell phone did not charge - it was plugged into the outlet in my bathroom.

Some unanswered questions remain:
* How did the bath mat get so soaked from such a distance and the rug right next to it stayed dry?
* How exactly did the drawers fill up?
* Why didn't I hear the water running, since I was standing in the kitchen directly below Ian's bathroom?
* Who invented GFCI, and what is his/her phone number? I need to express my gratitude.
* WHY DOESN'T MY KID CLEAN UP AFTER HIMSELF???

We may never know the answers to this puzzling situation. Honestly, I am not sure I want to know.

On Menopaus and Potty Training

My daughter and I have entered interesting stages in life.

As a mom who is 21 with 19 years of life experience, I am going through the hormonal mid-life phase that drives many women into psychoanalysis. Our mothers experienced this exhilarating plateau as their daughters were entering womanhood. These can be turbulent times as the biochemistry of each female forces unfamiliar experiences to surface at very inappropriate times.

In our case, Ainsley is entering the last phase of potty training. Thank God she isn't going through puberty at the same time! She has decided she no longer needs pull-ups at night, and I have pledged never to buy them again (yesssss!) She is very proud when she wakes up in the morning and is still dry. Occasionally, she has an accident during the night, but she is fabulous about getting up, changing her clothes and coming downstairs to tell me about it. I am a slacker mom, so I just let her climb in bed with me and snuggle until morning when I change her sheets.

A couple of nights ago she came to our bed at about 3:00 a.m. I was sleepy enough that I did not hear the reason for her appearance. An hour later I awoke to soaking sheets. I reached over to see how wet she was - and why she wasn't awake. Then I realized the majority of the moisture was under ME!

I muttered something under my breath and got out of bed. As I stomped into the bathroom to change my clothes, it suddenly dawned on me that I was soaked from head to foot.

"GEEEEEEZ! I didn't drink that much water after brushing my teeth!" I thought to myself.

Then it dawned on me. I had just had my first major hot flash - no, this was more like a late-July torrential downpour - since before my hysterectomy. And I couldn't decide if I should be relieved that it wasn't pee - mine or Ainsley's - or completely ticked off for what it really was.

At least this way I could throw down a towel and return to sleep, so there's an upside. The house is not in complete hormonal upheaval with teenagers and a menopausal parent. There's another plus. Perhaps by the time they enter puberty I'll be through the rough stuff and poor Steve won't feel like he is in his own personal hell.

Ainsley came down again last night because of a bad dream. Just after she got into bed between us, the dog threw up in the doorway. I woke Steve up to let him handle this one. After all, why should I have all the fun? Then, as things finally settled down and we were all back to sleep, our alarms went off to remind us that the night is short. At 5:00 I awakened to the soft, gentle music of Josh Groban. It is a slow and peaceful way to start my morning, that is, until 5:01 when Steve's alarm clock rips open my cloud of lucidity with The Beasty Boys. I swear it gives me heart failure every time. Uh-oh, here comes another flash. . .

Taxi Wash

Bath time at our house has always been a struggle. Ainsley wants to take a bath with the Ian, but Ian wants to go solo. Or, Ian wants to take a shower, Ainsley wants a bath and we only have time for one water event. Ainsley dislikes showers, and she despises having her hair washed. Ian would usually be happy if we let him float in the tub until the water is chilled - no washing, please. The list of conflicts goes on and on.

Tonight I felt like a super genius. The kids were being "taxi machines". Not to be confused with taxi cabs, "taxi machines" are the builders of taxi cabs. And they can talk. So my two taxi machines were walking around the house pretending to build taxis when I suggested it was time for the taxi wash. They arrived naked in the bathroom, emptied their gas tanks, and drove into. . .the shower!!!!

I gave them each a buffing cloth and poured gentle cleansing wash for them to do their headlights (faces). Each took turns rinsing under the gentle spray. Then we loaded their super duper sudsing sponges with heavy duty auto wash (ocean breeze and sweet pea scented) for them to scrub their doors (arms), hoods (chests & tummies), tail lights (what else. . .rear ends), axles (legs), and tires (feet). They really got into it. Then it was time for a good roof scrub (hair), which they also managed to do themselves, including rinsing each other to make sure all the suds were gone.

No arguments, no whining, no fighting. . .it was a work of art.

Why is it that their creativity and my brilliance don't coincide like this more often? Perhaps it is because they are not always in such a cooperative mood; or maybe most nights at 8:00 p.m. all the stellar ideas have been spent on the earlier part of the day and I am fresh out. I just hope that when they are older they remember evenings like this and realize that their childhood has had some great moments.

Happy Mother's Day

"Wow, Mom! You're cool!"










Ian and I wish all of you moms a wonderful day, filled with the abundance of joy you deserve.

Sometimes I Just Don't Know

The last couple of weeks have been very strange. Ian is bothered by something, but we can't figure out what it is. He walks around with his angry-ferocious-monster face on a great deal of the time. It is similar to the constipated-and-trying-desperately-not-to-be-constipated-look, only he walks around with his hands perched like claws ready to grab his prey. He is not endearing himself to any of his classmates.

He angers easily and then begins threatening to to terribly violent things, mostly to Steve and me. We talk to him about his threats and try to get him to understand why we are not mean or evil. He refuses to accept our explanation of whatever the disagreement is over. Then he marches off someplace to hide, eventually crying and seeming remorseful.

We have tried to find the reasons behind all this, but nothing seems to explain it perfectly. It could be multiple reasons. Some of the ones we have come up with are:

1. It's the end of the school year and the regular schedule at school has been randomly shuffled to accommodate testing, parent-teacher conferences, and special assemblies and activities.

2. Maybe he is constipated.

3. The weather has been stormy at night for the last 2 weeks. He may not sleeping well through all the noise.

4. It has been his first challenging year of school with homework almost every night. He could be tired and ready for a break. I know I am!

5. We do know he heard a story at school that scared him because he took it very literally. It was about a green monster who lives in your brain. When he talks to you, he eats away at your self esteem. The more you listen to him, the bigger he gets. I can see how that could freak out a kid who doesn't comprehend symbolism.

6. The other day he seemed very sad. He admitted that he was contemplating the future. He wondered what life will be like when he is 88 and Steve and I are dead. Part of his melancholy may be that he is beginning to understand the finality of death.

7. He has become extremely obsessed with religion, especially when he is in his bizarre angry mood. The other day he told me that God was going to kill me because I am mean to my children. He was ticked off because I scolded him for hitting Ainsley in the head with an empty plastic water bottle because he didn't want to listen to her talk any more. I wanted to grab him by the front of the shirt and yell, "WHAT THE HELL DO YOU THINK YOU ARE DOING?!" Instead, I put on my concerned parent face and calmly asked the politically correct question, "Do you think that was a good choice?" And see what it got me? God is still going to strike me dead because Ian said he was going to pray for it to happen.

Keep in mind we are a religion-neutral family. What this means is, we explain to the kids about religious ideas in terms they can understand. We talk about different beliefs, including that many people do not believe in a divinity. Our goal has always been to let the kids decide for themselves what to believe. I feel that spirituality is something so personal, it cannot be dictated. You have to discover it for yourself after years of asking questions and seeking the truth as it fits into your own belief system.

So where has he come up with such ideas about a brutal God that would even consider harming his wonderful mother?

I feel like I am raising a 16 year-old in a 7 year-old's body.


Or maybe not.

Ten Things Autism Has Taught Me

Actually, autism has enlightened me much more than the short list below would indicate. Including all of that information in one post would take longer than my attention span can tolerate, and yours too. These are the gems that have come into play at our house most often, or at least most recently. In my opinion, they are the most helpful for parents who are new to autism.

1. Autism currently has no cure. Some of you may disagree with this statement, and you are perfectly entitled to do so. There are numerous therapies available throughout the world, some more successful than others. Some are extremely expensive and yield questionable results. Some are even harmful to the children they are supposed to be helping. When it comes to promising results, ask these two questions: How much does it cost? and Does this sound too good to be true? Your own common sense should be your guide.

I recently heard a person speak who claimed to have "come out of autism". Oh, if only it were true! My husband heard this statement as well, and we looked at each other in disbelief. This person, although very successful, still exhibited many of the key traits that lead to a diagnosis of Asperger's: poor eye contact, monotone voice, repetitive behaviors to name just a few. While he may feel more at ease socially through learned coping strategies, his autism is still part of his personality. Now, if telling himself that he is over it helps him get through the day, so be it. But to say publicly that he has been cured is misleading.

We are fortunate to have many medications that temporarily alleviate some of the variables in the autism equation: ADD/ADHD, depression, anxiety, seizures, to name a few. There are also behavior therapies that enable autistic individuals to develop strategies or scripts for getting through difficult situations. None of these is a cure, because at the end of the day, the autism is still a pervasive part of that person's being. These options, however, do make life a little easier for our children and for us.

2. Autism is inherited. I was once on the heavy metals bandwagon, convinced that Ian's vaccinations had caused him to regress at the age of two. But like it or not, as I examine the personalities of relatives on both sides of our family, it is perfectly clear that my son's issues did not appear mysteriously. He is the exaggerated version of our family's quirkiest character traits. So, even if no one in your family has ever been officially diagnosed until your child was, chances are autism has been working it's way through your family tree for generations.

You can imagine my relief to know it wasn't all those tequila shots I did in college!

3. Kids with autism need love and affection, even if they have difficulty showing it themselves. Many parents are hurt when they realize that autism may cause their children to shun physical closeness and affection. The kids still need to know they are loved unconditionally - so tell them every day that you love them. Help them understand that they are an important part of the family, even if they prefer to be left alone. Find different ways to demonstrate affection. About a year ago I heard a report on NPR about a scientific study which showed that people who regularly hold hands with a loved one tend to be healthier than those who do not hold hands. When I told Ian about this evidence, he immediately agreed to hold my hand every morning as we walk to meet his carpool for school, for the sake of being healthy. He is much more affectionate now that he doesn't mind holding hands with others. Sometimes close contact with another living being is all it takes to bring him out of a funky funk. Our dog does wonders for him. Soft, quiet, unconditional love works with neurotypical kids. . .and it works with Aspie's too.

4. Yelling at your child does not improve his hearing. Before I knew for certain what Ian's issues were, the fact that I could be standing 2 feet in front of him and feel completely ignored confused me to no end. Whether he was hyperfocused on the television or a toy or just staring off into space, I couldn't understand how he could have absolutely no reaction to my voice. Increasing my volume only served to make me hoarse, because his reaction was still zero. This was when I started to suspect autism was at play. Now, a light touch on the shoulder and a simple whispered command in his ear is the most effective way of getting his attention when he has retreated into his safe place. It saves me a lot of frustration, too.

5. Every autistic child is different. Just as every typical child has strengths and weaknesses, so do our spectrum children. What works for Ian, may not work for your child. Rely on your instincts and the cues your child provides to find ways of helping him find his way. And remember, you'll both get better at it as time passes.

6. Children with ASD crave order and structure. In the beginning, it is important to respect this rule and follow it so that your child will become comfortable with who he is and feel safe in the world. Eventually, however, you will have to start breaking the "rules". Show your child that it is o.k. to change the order of things. Nothing bad will happen if the routine is interrupted. Go ahead - wear red underwear instead of white on Monday. Eat something different for breakfast. Drive a different way home from school (I heard you gasp on that one)! Knowing when to break the rules will help to lesson your child's anxiety. It is actually more complicated than that. For a deeper explanation, refer to #9.

7. Your child does not tap his spoon on his plate 4000 times during dinner just to annoy you. I know, it seems like he only does it when you have a headache, your spouse is working late, you forgot to pay the cable bill (making it impossible to watch Thomas the Tank Engine on PBS at the specified time), you've just discovered you are out of the only nutritious food item your child will eat in the evening, and you have PMS (Dads: equate that one to you haven't gotten any in 3 weeks). It's annoying as hell to listen to these repetitive sounds, but believe it or not, they provide comfort to your child. Eventually, you will be able to place your hand gently on his and quietly ask him to stop. And it will work. Hopefully, you won't be on your seventh set of dinnerware by then.

8. Every parent needs to get away. Stay-at-home and home schooling mothers especially need to get away - for a LONG time! An afternoon off every now and then doesn't count. It is impossible to relax and regroup in a few hours. When I say get away, I mean GO FAR ENOUGH AWAY THAT YOU CAN'T COME HOME EASILY. Leave the state for at least 2 nights. Read a book solely for entertainment (preferably NOT one about autism). Go to the movies. Go hiking. Go shopping - for yourself. I highly recommend getting a hot stone massage. Try it once and you'll be hooked. Trust me. Take time to nurture the you that has been forgotten because of your caregiving role. You need to do this. You deserve to do this. You must do this on a regular basis so that you can be the parent you want to be, the one your child deserves. If I hadn't started taking my annual retreat to help me remember who I am, I would now be drinking margaritas for breakfast every morning. Delicious, yes, but probably not a good idea.

9. Some drugs are your friends. Anti-depressants could well be one of your best friends. For you and for your child. It's just a fact that life in the world of autism is filled with anxiety for all of us. It is o.k. to admit that it is more than you can handle alone. Seek counseling. It helps. Take the drugs (the ones prescribed by a doctor, not a dealer). They help also. Do the same for your child. The bumps will be smaller and you'll both be better equipped to handle them if your insides are not tied in knots. Be open to the wide range of pharmaceutical help for your child. Autism is not a behavior problem that can be worked through. As it stands today, it is a life long disability that requires medical monitoring. Suicide rates are high in this group. Take your child's mental and physical health seriously.

10. Your life will not be as you had planned. Get over it. Make a new plan, one that is very flexible.

Bonus: I am a better parent because of autism. I have to thank my friend, Tara, for that one. She helped me to realize how much autism has actually enriched my life with the things I have learned and the people I have met. More importantly, I am now able to love and accept people for who they are, not what I wish they would be. When you get to this point, anything seems possible.