Teen Autism

I get a lot of page views as a result of some head-scratching search topics, as most bloggers do. Some of the searches have absolutely no relevance to what I write about, and some are quite funny. But here’s one that’s funny and relevant. In fact, I’d have to say that this one wins the prize for Funniest Search Topic of the Month, although I get the impression that it wasn’t necessarily supposed to be funny. Okay, here it is -

“autistic teens wear boxers” and “autistic teens wear briefs”

For what purpose would one need to know this? A survey? A parent checking on the general consensus before heading out to Target? After my laughter subsided, I was intrigued. I guess it could be a valid concern. It just looked funny in my list of searches.

And for the record, the autistic teen who resides here wears boxer briefs. Has for years and loves them. Now you know. Just in case the person who typed that search decided to check back.  And I’m not laughing at you, I’m laughing – oh, you know.

I’ve seen this floating around Facebook lately and have decided to post mine here:

1. WHERE DO YOU CURRENTLY LIVE?
Oregon, USA

2. WHAT IS YOUR CHILD’S NAME, AGE AND DX?
Nigel, age 14, Autism

3. WAS YOUR CHILD PROPERLY DIAGNOSED?
Yes, twice. First time right when he turned 3, and again at age 5, for insurance purposes.

4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?
I was confused. Back in 97, when he was first diagnosed, all the information I had on autism was archaic. It said that autistic children sat in a corner and rocked themselves all day long. Nigel did not do that. But I quickly came to understand that autism manifests itself in many ways.

5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD?
The ignorance of the general public, and the bullying my son has endured. When he was younger, Nigel would have screaming meltdowns in grocery stores, public restrooms, etc. because he was in agony due to his sensory issues. People usually glared at us or made comments about “controlling” him. Also see #18 below. This is one reason why I blog about autism.

The hardest thing for my son has been the bullying. He has endured so much from mean, uncaring kids. And when he tries to defend himself, he ends up getting in trouble. I ended up homeschooling him because of the bullying and his anxiety that resulted from it.

6. WHAT IS THE BEST THING?
My son has an amazing mind and an engaging personality. Anyone who takes the time to get to know him – and to be patient with him – likes and appreciates him.

7. HAVE YOU TRIED THE DIET AND DID IT WORK?
Assuming this refers to GF/CF, yes, we tried it. Nigel does not seem to have the gut issues that others with autism have, so it didn’t work for him.

8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?
The thought of chelation scares me, and I’m not familiar with HBOT.

9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?
Nigel had modified ABA-based therapy (and OT and speech) from the ages of 3 to 6, 4-5 days a week with two weekly home visits. We were fortunate that he had a positive response. I believe that is a key factor in how he is able to function today. After that, he continued with speech and some behavioral therapy over the years.

10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?
Try not to be bitter. Sometimes, like when they smear blood from a bloody nose all over a room, or when you just have to pick up some milk at the grocery store and they’re screaming and bolting, or when they burn holes in the couch using a magnifying glass, or when the school has called you for the third time this week because of behavioral issues, or when you’re worried about their future, it’s really hard not to be bitter. We didn’t ask for this. No one does. But being bitter won’t help you; it just builds up and makes you feel worse. It took me a while to figure that out.

11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?
No idea – I try not to dwell on statistics too much.

12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?
Just mine.

13. HAVE YOU EVER MET A RECOVERED CHILD?
No. It’s not a mental illness. It’s a different neurology, a different way of processing.

14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?
Nigel is currently homeschooled for the past year, but we are in the process of having him go back to mainstreaming part-time.

15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?
some

16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?
Possibly. I’m divorced, but not because of the autism.

17. DO YOU HAVE A GOOD POOP STORY?
With his sensitive olfactory glands, Nigel never sought to do much with his poop except flush it. Prior to toilet training, he touched it once, and apparently that was enough. Blood, on the other hand, is a different story.

18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?
A co-worker of mine once said to me, “Having an autistic child must be easy.” I thought she was being sarcastic, maybe, but I asked, “Why do you say that?” She answered, “Because they’re so quiet.” I tried very hard to be calm as I said, “Just because some of them can’t talk does not mean they’re quiet!”

19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”
I talk about the spectrum, that it’s neurological, that the jury’s still out on the causes, and I talk about how it affects Nigel.

20. WHO IS YOUR “AUTISM COMMUNITY HERO”?
I have said before that siblings are the unsung heroes of autism. I am so proud of my younger son Aidan and what he has experienced with having an autistic older brother. Please read about him here. And here’s another wonderful sibling. I’m sure there are many more. All of them have my love and admiration.

21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?
Not sure if this question refers to my own community or the autism community at large, but I am glad to be a Chapter Rep for the Autism Society of Oregon. They host many helpful seminars and awareness events, and I’m proud to be a part of it.

22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?
Yes, I did. Fourteen years ago most people didn’t question vaccination. But I continued to vaccinate him, because God forbid he contracts meningitis.

23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?
Yes, they have been very supportive and loving. I am blessed.

24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?
I’ve learned that there’s still so much more to learn, and to do. Certain challenges can change with time and therapy, but other challenges take their place. And we’ll face them.

I’ve learned that even though sustained bitterness is detrimental, it’s okay to be sad sometimes. We’re human, after all. All of us. And we’re just doing the best that we can.

I’ve also learned that patience and a sense of humor and an occasional glass of wine will help immensely.

25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?
If I had answered this questionnaire years ago, when it was so hard just to get through the day, I might have said Yes. Now, I say No. I can’t imagine Nigel any other way. But I think, after all these years, that even if he had not learned to filter his sensory issues and started talking, at this point I still wouldn’t want to change him. People with neurological differences are amazing regardless of their functioning level.

Let’s be honest: This is hard, this autism business. It’s hard on us. It’s hard on our kids. Those of us who blog have an outlet, a source for venting, and a type of therapy. But we don’t just talk about the hard stuff – trying to get through the day while worrying about the future. We’ve also been known to mention how rewarding it is to have a child with autism, how fulfilling. There is no doubt that our autistic children have enriched our lives.

And so, with that in mind, I give you my 7 Positive Things about Autism:

1. 1) As special needs parents, we are the most attentive parents around. And that’s a very positive thing. I do believe that if my son were not autistic, I would still be an attentive parent. Of course I would. But the fact is that because he is autistic, I go above and beyond the norm of parenting. It’s harder, and it takes a lot out of us, which would seem like a negative thing. But I’m proud of what we do, the example that we set. I think it’s very positive.
2. 2) We learn not to take anything for granted. Whether it’s talking, showing empathy, or being able to eat at a restaurant without screaming or writhing on the floor in sensory overload, we notice and appreciate every small step. Because it’s not so small for our kids.
3. 3) Our ASD kids are unique. They view the world differently, and if we can just be privy to a small part of that, we are indeed blessed.
4. 4) Nigel’s need for routine helps to keep me more organized. If I already know that we have pizza on Mondays and Fridays, then I don’t have to think about it. Dinner’s already planned two days out of the week. One less thing to deal with.
5. 5) Autism teaches siblings, relatives, and anyone in contact with our kids – even ourselves! – to be more understanding, patient, and more accepting of people who are different. And that’s a very good way to be in this world.
6. 6) As a writer, I get some great material because of autism! Whether funny or emotional, I always have entertaining or intriguing topics to discuss.
7. 7) There is so much to enjoy about our children’s personalities, whether they are verbal or not. My son has a very direct nature, makes interesting echolalic associations and non-verbal mannerisms (even though he is verbal), and is very opinionated. He’s also got some great ideas forming in that ND brain of his. Some ideas are serious, some funny. And for all the difficulties he experiences (and I with him), I can’t imagine him any other way. Believe me, I’ve tried – it’s a natural thing for parents to do, especially on the hard days. But I think what gets us through are all the little quirky wonderful things that further endear us to the children we love.

Please add to the list – what, in your experience, is positive about autism?

Just wanted to post a reminder about Autism Twitter Day! 

Bonnie at Autism Family Adventures has organized this event, which runs three times on Tuesday, December 16. Click here for instructions on how to participate. There are prizes available for parents and ASD kids of all ages and levels. Don’t miss it! 

I suppose many typically-developing teenagers question why they need to learn certain things in school, or why they need to take a certain class. And you can usually reason with them along the lines of “You need to graduate from high school so that you can go to college. Or if you don’t go to college, you still need to graduate from high school so you can at least get an entry-level job somewhere. And in order to graduate from high school, you need to take some classes that you don’t like.” And they won’t like this reasoning, but they will eventually see the logic.

The autistic teen? Not so much. “You don’t think like I do.” This is what Nigel tells me after I have tried the above-mentioned reasoning tactic. He really does not see the merit in graduating from high school. “I want to live how I want to live. Why can’t we live like our cavemen ancestors? That was when survival was more needed than mathematics.” And he is serious.

This is what I deal with when I try to teach him algebra and essay writing. And I point out to him that at least now he can learn these mandatory things at home where it’s quiet and he is not distracted and harassed by other students. I also gently mention that I’ve made some major adjustments to be able to do this for him. But that’s a concept he can’t grasp. Even though once in a while he’ll take out the trash without complaining and then (!) he actually puts a new bag in the trashcan without being reminded (!) or he scoops some ice cream in a bowl for himself and then – on his own – scoops some in a bowl for me (!), even though he does these things once in a great while, he is still pervasively influenced by the aut, the self. Selfism. It’s not that he only thinks about himself or only cares about himself. It’s not egocentric or narcissistic. It’s that he cannot understand someone else’s viewpoint. He can’t possibly realize that, as a single parent, I go through a lot to be able to homeschool him. He can’t understand why education is necessary, beyond what he already knows. He is governed by the self. “You don’t think like I do” also means “I’m only able to think how I think.”

Mind you, this is just a mom still trying to figure it out. I think I know enough, and then months later I have another epiphany and I realize that I have so much more to learn. I know now that I will spend the rest of my days trying to understand my son’s autism. Trying to think like he does. Many parents say that having an autistic child will make you see the world differently. My son is fourteen and every day I am still realizing just how true – how profoundly true – that is.

I have put off writing this post, but it is time. Holly at Fearless Females, one of the blogs I read on a daily basis, wrote about this subject, and it encouraged me to write a post about when (and how) I told Nigel about his autism. On that day, Nigel had experienced something that I’ve referred to as a “lucid moment” or a “moment of clarity” (which Holly also recently wrote about). It was a rare moment when he might ask me a question, or I’d ask him a question and he’d answer me, not in the rote tone of autism, but in his own sweet voice, with complete comprehension and perfect enunciation. The words he used were his own, not echolalic, not a phrase he had memorized from a video that would fit within the context of the situation. And during these fleeting moments of clarity, I could see in his eyes that it was really him, not the autism, the usual vacant quality, that was communicating. At least, that’s what it felt like to me.

On the day in question, I had received a call at work (up until I began homeschooling him a year ago, not a day went by that I didn’t fear receiving the dreaded calls that my son’s behavior was too disruptive, and I needed to leave work to come and pick him up). I’m not sure what he did that day. It was a blur of many days, many issues. Once a boy who had somehow antagonized him came up to him, and Nigel grabbed him by the shoulders and swung him around and threw him on the ground. Another time he threw a pinecone in a friendly girl’s face, because someone else had riled him up. He had chased kids with sticks in his hand. He had knocked desks over and screamed in class. He had refused to do class work, complaining, “I’m too hard,” back when he was still learning pronouns.

So I picked him up from school, and his full-time education assistant explained to me what had happened that day. Nigel, age eight, stood with us for a moment, then walked off a little ways until we had finished talking. He hates being talked about, always has, and he’s never been oblivious to it. And he knew that other kids’ parents didn’t talk to any teachers about what kind of day they had, every day. But that day, he was able to verbalize it.

I will never, ever forget the feeling in my body as we walked to the car, side by side, and he looked up at me and said, so lucidly, “What’s wrong with me, Mom?” Those words gripped me, set off a knot in my stomach, chilled me, stunned me (since most of his speech at that point was still echolalic or with incorrect syntax). I knew the day would come, because Nigel had always been social, and he was developing verbal skills. I knew one day he would wonder, and he would ask. I was not prepared for it that day, in the middle of second grade. So soon, so harsh. I stopped for a second and put my arm around him. “We’ll talk about it when we get home, honey,” was what I said.

I berated myself later, wondering, Why, when he asked me what was wrong with him, didn’t I say, ‘There’s nothing wrong with you, honey’ ?  To this day, I wish I had said that instead. But his words had caught me off guard, and I wasn’t prepared.

How do you explain autism to your eight-year-old autistic son? I don’t even remember how I began. I’m sure I tried to keep it as simple as possible. I think I started off by saying, “Some people have a disability in their eyes and they can’t see. And some people have a disability in their legs and can’t walk. A disability is something that makes it hard for people to do things. There is a brain disability called autism. Autism makes it hard to learn to talk, and it makes your ears sensitive so they hurt when you hear air dryers in public bathrooms or leaf blowers outside or the vacuum cleaner.” I wasn’t sure if he comprehended what I said, or if he was even listening. He didn’t appear to be. I continued by telling him that his teachers and family will help him with understanding autism, and there are some good things about his autism too, like learning to read early and knowing how to read maps. I told him it’s okay to have autism. He seemed fidgety at this point, and so I told him he could go watch a video. I hugged him, and after he left, I cried.

But not for long. I’ve always acknowledged my emotions concerning having an autistic child, but I’ve also come to realize that vigilance and advocacy are two things that I need to focus on, and they take up a lot of time and energy. So I let myself cry when I need to, but my mind soon jumps to begin composing an email to the Special Education Consultant (advocacy) about whatever issue caused me to cry, and then a split second later I’m dashing out of the room (vigilance) to find out why Nigel’s yelling or what just crashed.

So that day that I told my young son, with a huge lump in my throat, about autism, I did cry for a minute. Then I got up, went to my computer, and wrote “Nigel’s Autism Book.” I wrote it in the first person, starting with, “My name is Nigel. I like to run, read, laugh and play like other kids. But there is something different about me. I have autism.” The rest of the book talked about how autism affects him. Things like, “Sometimes I don’t know what to say and I say something from a video. I like to watch videos. But other people do not know words from my videos. First I will tell them what video I am talking about when I say something from a video.” I ended with “Other people have autism too – other kids and adults. Someday I can meet them.”

Unfortunately I didn’t finish the book until after he had gone to bed, so we didn’t have the opportunity to read it. The next day was traumatic for him. He was beside himself, physically and verbally acting out with anxiety and mentioning autism to all the teachers (I guess he was listening when I had talked to him). And, of course, I got a call at work that I had to come and pick him up. We came home and I read him the book I had written for him, and we read it with Aidan, who was six at the time. Nigel spent the rest of the day carrying his book around and later stated that he wanted to bring it to school the next day. He had such a relieved look on his face that I reprimanded myself for not preparing the book before telling him that he had autism. Of course! He needed something visual in order to gain some understanding of this bomb I had dropped in his lap. Now he had an explanation. Something he could show to other people because he couldn’t explain it in his own words. He took it to school and showed his teachers and the kids in his class. And some of those kids still care, still look out for him, six years later.

I consider “Nigel’s Autism Book” to be the most important thing I’ve ever written. If I publish nothing as long as I live, I have helped my son with my writing, and that is worth so much. Nigel still keeps the book on his bookshelf, and every now and then I see him reading it, as if to remind himself how far he’s come.

Sometimes I need a wake-up call.

Last week Nigel attended a Scout meeting, which he does about twice a month. There are four Scout meetings scheduled per month, but he can only handle two, so that’s what we do. He has been around most of these boys for a few years now, and they do the best they can to accept Nigel’s idiosyncrasies, or at least tolerate them. Most of the time, he gets through a meeting with minimal disturbances, and so I develop a sort of complacency.

Nigel had a bit of a hard time at the meeting last week, and I couldn’t figure out why. I sat on the sidelines, with a few other parents who attended, and kept an eye on him, hoping he wouldn’t get out of hand. He kept talking out of turn, interrupting leaders who were speaking, getting in kids’ faces to spout movie echolalia, making noises, and generally not participating. Generally not functioning very well. I was convinced that he had forgotten to take his medication that morning. That has to be it, I thought. Usually, if we forget his medication in the morning, by evening he is disruptive and exhibits the behaviors I described. I kept looking at the clock, hoping he would not become unmanageable, and finally the meeting ended and we went home without any major catastrophes.

When we got home I immediately checked his pill container for the day. It was empty. He had taken the medication in the morning, so it wasn’t that. What then? What had caused him to become so disruptive in a familiar environment with familiar people? And then the alarm went off in my head. My wake-up call.

This is what autism does. This is what it has always done, since he was a toddler. There are some things you can predict, some behaviors you can prevent, but some you can’t. And there will be some things, plenty of things, you can’t understand. I know this. I’ve lived this. This is autism, and it’s the reason why he acts the way he does. And medication helps, dietary changes help, and therapy helps.  Advocacy helps. Awareness helps. But it’s still there. It’s still autism.

So I dig my heels in a little deeper. Eleven years post diagnosis, I choke up on the bat, I go deep, I open my eyes a little wider. I renew my vows. We’re in this for the long haul. I know I won’t always feel strong, but I do now, and it feels good.

After many years of living with my son’s autism, I feel like I know autism when I see it. It’s like I’ve got this radar, and I’m sure other long-time autism parents sense that as well. There’s a difference between a “terrible twos” tantrum and a sensory-overload meltdown. There’s the unmistakable taking an adult’s hand over to the refrigerator to open the door to get something rather than asking or pointing. The lining up of toys, the not responding to questions or comments. And yes, these are rather stereotypical signs. But it’s the child’s presence, and face, that I recognize more than anything.

A while ago I attended a child’s birthday party with a friend. It was for his co-worker’s three-year-old son, with many friends and family members present. Within minutes of observing this little boy, I knew that he had autism, not just by his mannerisms and the signs, but by his face. It was so familiar, and my blood turned to ice because I knew that his parents didn’t know. A few moments later, I turned to look at my friend, someone who had spent much time around my son over the years, and my friend’s eyes were wide. He knew, too. “I think he has autism,” my friend said quietly to me.

I felt strange. I was not close to these people. How could I go up to them and say, “I think your son has autism”? Or even the less-shocking, “Have you looked into speech therapy?” I was torn because I felt like I should do something to steer them toward early intervention, and to somehow convey to them that I understood. But it was not my place. I was an outsider.

I continued to observe the little boy and his family. There was so much love and acceptance, and so much accommodation of the autism that they didn’t know about. Was I obligated, as a seasoned autism parent, to say something? Part of me thought so. What if they knew something was different about their son? What if they were searching for answers? But a larger part of me just realized that, as a stranger, it wasn’t my place. It was a birthday party. I told my friend to give them my number if, in the future, his co-worker approached him to say that his son was diagnosed with autism.

The radar will always be with me, and I’m sure that other situations will occur throughout my life in which I find myself faced with the “should-I-say-something” dilemma. It comes with the territory. But so does a lot of support, knowledge, and understanding that I can offer down the line, when they’re ready. That’s my place in the picture.

A few weeks ago we enjoyed a visit with some long-time friends who live out of state. Our families have been friends for so long that we joke that our sons were “friends before they were born.” At one point, their NT son Jonathan, who is twelve, was talking with Nigel about how he (Nigel) learned to read when he was three and a half.

Jonathan: That must be your savant skill.

Nigel: My what?

A sort of chill permeated the air, even though it was about 105 degrees around the patio where we sat. Jonathan didn’t respond, his parents didn’t respond; I think everyone was waiting for me to jump in. It had never before occurred to me to talk to Nigel about autistic savants. I had never thought that his hyperlexia qualified as a savant skill. Sure, it was astounding at the time, but the sources I checked do not include it as a sign of Savant Syndrome.

Me: A few autistic people have skills like computing difficult math problems in their heads, playing music very well, painting or drawing something in great detail, and memorizing lots of information. They’re called autistic savants. But not every autistic person is a savant. In fact, most are not.

Nigel: Good. Because I hate math.

So glad that’s settled.

I’ve been thinking lately about this army that I’ve been part of for almost eleven years. The first few years I was fighting the autism itself, grasping at therapies and treatments when there wasn’t much out there, as far as resources and current information. And, in my state of shock, I was referred to an excellent agency called Child Development Services. They had current information. They helped my son, those speech therapists, occupational therapists, behavior consultants, and autism specialists.  In my mind we were fighting the autism. I wanted things to get back to normal.

Then I realized I had to find a new normal. I realized that my son wasn’t going to “grow out of it.” He would progress, he would slowly, painstakingly learn to talk, he would gradually learn to filter the sensory input that often caused him to scream and writhe in public. And my fight changed a bit. I tried to mainstream my son, and I came to feel like I was fighting the school district. He had an educational assistant (two, sometimes); we had weekly meetings during which his teacher actually rolled her eyes when discussing my son; I came to the school and found him running around the halls aimlessly. This was not a new normal that I could live with, so we switched schools. Again.

Now I’ve accepted that the fight will continue indefinitely, but it continues to change. Now that I’m homeschooling, I don’t feel like I’m fighting the school district, although I should have. In the space of his last six weeks there, they suspended my autistic son twice, for behavior that he could not control. Part of me wishes I had taken them to court, but I didn’t have the time or the energy, really. And my younger son had to still be enrolled in that district, to stay with his friends. I had to consider his needs as well.

We are all still fighting. We all have our own crosses to bear. I once read or heard an analogy that if all the people in the world were lined up next to each other, and we could put all our problems in a suitcase and set it in front of us and then trade suitcases with someone else, in the end we would pick up our own suitcase and carry on with that. Some of us are fighting the autism, some of us are fighting the school district, and some of us are fighting the ignorant public, trying to find a place in it for our kids. A place of acceptance and a place of dignity.

So here’s to all of us who pick up our own damn suitcase every day and continue on. We may not have enlisted in this army, but we believe in the cause, and we’ll keep fighting.