Teen Autism

My friends are my estate.  - Emily Dickinson

Where would we be without our friends? I know that I would certainly be in a far less positive state of mind without mine, at any point in my life. Everything - from walking to school in fourth grade to attending high school dances to needing someone to help me move or crying about my divorce - would have been so much harder without them. Nor would the enjoyable things have been as much fun. Upon my return from our recent mini-trip, I realized that forging that connection was the point of the entire weekend.

We started off by visiting Aidan’s best friend since first grade. He had moved out of our area in the spring and now lives on the central coast, almost four hours away. We drove to their home on Friday night, and the boys had a great time playing video games and goofing off. I enjoyed seeing his friend’s mom, with whom I have also become friends. I love the fact that among the many benefits of having children are the new friends we meet because of them. I probably would never have met her if Aidan hadn’t become friends with her son, and I enjoy her company and talking about our lives while our kids get to roll down huge sand dunes and make up for lost time. It doesn’t surprise me to note the similarities between the parents of my children’s friends and me.

The next morning, Nigel and I left Aidan at his friend’s house and continued up the gorgeous coast. We met up with Pixie and her husband at the Oregon Coast Aquarium and enjoyed looking at all the marine exhibits, including the shark tunnel. Nigel communicated with a sea otter. The Pixie parents found souvenirs that were perfect for each of their children back home. Then we caravanned up to the house that they had rented in Rockaway Beach, gorged ourselves on savory Mexican food for dinner, built a bonfire on the beach, hot-tubbed, and talked until we nearly passed out. Pixie and her husband are yet another example of friends I have met because of my children. If Nigel had not had autism, I would not have started blogging (at least not about autism), and then I would have missed a friendship with two amazing people who know what it’s like to have to fight for your children, who experience the same emotions and triumphs and fears, and who share many of the same priorities and dreams. They are warm, witty, and genuine, and I am so happy to have spent time with them. They may live far away, and they may be among the newest of my friends, but I value my connection with them immensely.

Sunday morning, Nigel and I drove a little further up the coast and had brunch with a friend I’ve had for 28 years. We went to elementary and junior high school together in southern California, and we’ve kept in touch through high school, college, and beyond. Though in some ways our lives are different, I think it’s no small coincidence that we both ended up making Oregon our home (even though at opposite ends of the state)! We shared a lovely brunch of homemade popovers with homemade peach jam, talked about our families, looked at the photo album of my Nepal trip, and commented that we need to find a way to see each other more often!

After that, Nigel and I made our way back down the coast and picked up Aidan, and then we jogged back to the middle of the state to stop in and see my sister and brother-in-law and my five-month-old nephew. He is the smiliest, cutest little bug ever! My brother and sister-in-law also happened to be visiting that day, up from LA. It was such a wonderful, impromptu little reunion! We took turns holding the newest member of the family, feasted on a lovely pasta dish with homemade pesto, and sampled my sister’s homebrewed beer. We laughed and reminisced. We communed. All of us enjoy each other’s company so much. I realized that my siblings - and their spouses - are not only family, they are among my cherished friends.  

And so I wonder again, where would I be without them in my life? Where would any of us be? As Emily put it, my friends are my estate. And there is so much room in the human heart. More than we could ever imagine.

with Pixie at Cannon Beach - photography by Nigel!

We are bound for the coast as soon as we get home from work and school! Yes! Nigel has completed two successful weeks of high school, and it’s time for a little break. A few issues have come up, but I’m very satisfied with how they’re being addressed. I’ll go into a little more detail next week. For now, we’re packing! Aidan is going to stay with his best friend who moved in the spring, and Nigel and I are going to visit some other friends, including Pixie, who’s vacationing on the Oregon coast this week! (Go ahead, click on the link and check out her blog!) I’m so excited to see her!

I won’t be posting here again until next week, but on Sunday I’ll be at Hopeful Parents. It’s sort of a follow-up post to the one below. You know, once more with feeling. With any luck, I set the post time correctly, and it will be there first thing Sunday morning, while I’m having brunch with friends! Cheers! 

Last weekend, Nigel had some friends spend the night for a little end-of-the-school-year party. I’ve mentioned Nigel’s friends, Nicholas and Tyler, before; Nicholas is Nigel’s age and Tyler is Aidan’s age. They are also brothers who are involved with Scouts, and we’ve been fortunate to know their family for several years. They’ve always been supportive and understanding of Nigel. I know that he values their friendship greatly, as do I.

So the boys had a blast, complete with pizza, root beer floats, gun fights, and a movie marathon. They’ll indulge Nigel in watching his latest favorite disaster movie with him, and he doesn’t mind if they fall asleep while they do. They’ve seen Nigel melt down, they’ve witnessed him being harassed at school, they know he’s prone to movie echolalia, used to have a type of barking laugh, and can sometimes get a little carried away when he’s having fun. They also know that sometimes he says things that are inappropriate or negative, and they realize that he doesn’t always understand these things. They’ve seen him at his worst, but they’ve also seen him at his best - creative, fun-loving, imaginative, and knowledgeable. I, for one, am so appreciative that they’ve stuck around. I know that Nigel is too.

And I appreciate their parents just as much. Their mom, Cheryl, a very good friend and a regular commenter here, and I like to talk for a bit during the pick-up/drop-off times when we can. We check in about our lives - our kids, parents, pets, homes, jobs, plans. Last weekend we talked about the upcoming transition to high school, that we couldn’t believe how big our older sons have so suddenly become.  I talked about how much better I feel about how Nigel’s doing socially, how the combination of his medication and having a few good kids around him has helped immensely. I mentioned that I thought it really made an impression on most of the other kids that I had to pull him out to homeschool him for a year and a half, and when he came back, many of them realized - hey, this is someone who needs a little extra help, a little understanding. Maybe those kids even matured a bit. Cheryl told me that she had recently asked Nicholas how Nigel was doing at school, if anyone was bothering him. Nicholas told her that aside from a small group of kids that likes to target him, everyone else has been nice to him. He said that if anyone sees any of that group approach Nigel to bother him, someone else always goes over to intervene and help Nigel out. They’ve got his back.

I told Cheryl how glad I was to hear that, and if, in my choked-up state, I neglected to thank her, I’m doing it now. Her boys, and a few others, have always been the core of Nigel’s circle. A few months ago, when Nigel, by choice, started back at the middle school to finish eighth grade, I tried to form a Circle of Friends by requesting it at his IEP meeting, talking to the principal about it, and emailing information to those who could make it happen. Despite my efforts, the administration didn’t pursue it. I felt so bad, felt that I should have done more, been a squeakier wheel.

But something did happen. When I wrote the letter to the school administrators, they talked to the kids who were involved in making a spectacle of Nigel. They - finally - told the kids a little about autism. And some of those kids felt remorse, and concern. And instead of continuing to have fun at his expense, many of them changed. They started being kind and helping him. I had read that this can be a positive result of Circle of Friends programs - that even kids who are not involved in the program hear about it and respond to the autistic students differently than they had before. It’s a ripple effect that can sometimes reach the whole school. That is what I hoped for when I requested a Circle of Friends program at Nigel’s school. And even though the program was never officially started, it seemed to happen on its own.

Less than a year ago, Nigel sat in his room one night and drew ape faces in his yearbook on the photos of all the kids that had bullied him. It made him feel better - his own type of art therapy. It was heartbreaking to see how many faces he drew over. This week, when he came home with his yearbook, it was filled with autographs and well-wishes for a good summer. It was filled with “you’re cool” and “see you next year.” These kids will be going with him to the local high school in September.

I had wanted a Circle for Nigel, but in less than three months, I got something much bigger. And I have a feeling that we’ll be having a lot more pizza-and-movie parties at our house next year.

I got some funny searches this week: “100 count a Kindergarten,” “living in a car,” “angel of doom,” and “how to sew a wolf head.” But my favorite search this week was not, I presume, intended to be funny. And I want to give a big hug to the person who typed it in.

how to get to know an autistic teen

Wow! Doesn’t that renew your faith in humanity? Whoever you are, can we clone you? If more people wanted to get to know autistic teens, if more people realized that they have feelings and interests and personalities worth knowing and cared enough to find out how to achieve that, our kids would be a lot happier and so would we. And more people’s lives would be enhanced by knowing them. Because, verbal or not, they have a lot to offer.

So, how do you get to know an autistic teen? Your approach should depend somewhat on the teen’s communication ability. If you’re wanting to get to know a non-verbal autistic teen, your best bet is to contact the parents or caregiver first to find out what you can about the teen: likes, dislikes, things that might upset them. They might communicate with PECS or writing, or some other method. The important thing to remember is that, regardless of how they communicate, their receptive communication is usually much greater than their expressive, and autistic teens understand a lot more than people realize.

The following is a list of guidelines for getting to know an autistic teen:

• Find out their interests, which may or may not include computers, Lego, science, history, movies, superheroes, movies about superheroes, Star Wars, Indiana Jones, etc. (Fellow parents, feel free to add to this list of interests in the comments!)
• Don’t expect eye contact, handshakes, or hugs. At least not for a long time, in most cases.
• Don’t use figures of speech, which tend to be confusing for literal-minded autistic teens.
• Do expect many verbal autistic teens to speak in a monotone voice - it doesn’t mean they aren’t interested or are being rude. This type of voice is just a common trait of autistic teens.
• Don’t expect terms of politeness. Autistic teens often forget to say thank you when you give them something, whether it’s a compliment or a gift or a piece of gum. If you ask “How are you?” they might say “Fine” but not reciprocate by asking the same of you. Conversational niceties are difficult for autistic teens to remember because most do not understand the purpose. Many try to remember to say them anyway.
• Do be patient. Sometimes it takes a moment for the autistic teen to formulate a response.
• Don’t expect them to talk for long periods of time in a conversational manner. You know how when someone trips a little, a friend might jokingly say, “Been walking long?” Well, some autistic teens haven’t been “talking long.” Mastering the art of conversation is something that many of them are still working on, and will continue to. They might likely end the conversation by bluntly saying, “I’m done talking now. Bye.” Again, they don’t mean to be rude. Don’t take it personally.
• Do be aware, especially if talking outside, that autistic teens may react wildly to an insect that flies near them or to a sound that startles them or a sudden bright light in their eyes. Just accept that it’s part of who they are, and know that they can’t help it and they deal with it as best as they can.
• Don’t feel slighted if you say hi to them in passing and they don’t respond. They’re so busy filtering all the sensory input of wherever they are and trying to organize their brain that a passing hello often won’t register until after you’ve passed them. Again, don’t take it personally. Really - they cannot help it. Many autistic teens also contend with face-blindness.
• Do realize that even though an autistic teen may not show many facial expressions while interacting, most of them still want friends, and all of them have feelings. They probably really appreciate that you’re taking the time to get to know them and understand them, but they don’t know how to tell you that. Be persistent but respectful. They are worth it! And so are you. Take it from a parent of an autistic teen - we appreciate you more than words can say.

The Scene: A Boy Scout meeting inside a church hall. About twenty scouts are in attendance, and their parents and siblings, as this is family night. A game, like TV game shows such as Who Wants to Be a Millionaire, is in progress. The room is rather boisterous, with people shouting out answers, and the mother of the autistic teen is always amazed at how her son is now able to filter all the sensory stimuli and can handle being in the room. Not only can he handle it, he is participating, calling out answers, exuberantly displaying his excitement when he is correct. His mother is seated next to another mother of a scout, a preteen with Asperger’s. The two boys are also in the same social skills class together. When the game ends and the winning team is the one that the autistic teen is on, he stands up, does a little dance a la MC Hammer, and sings “Can’t touch this!” People in the surrounding area laugh good-naturedly. Suddenly, the Aspie gets up out of his chair, walks across the aisle to the autistic teen as he is singing, and touches him gently with an outstretched index finger. Thwarted, the autistic teen says, “Aagghh!” and sticks his tongue out at the fleeing Aspie.

Their mothers laugh out loud together.

I’ve written before about Nigel’s quest for friendship and his need to be social. He has been fortunate to meet some patient and friendly NT kids through his involvement in Scouting. Continuing with the What It’s Like series, I wanted to highlight a couple of his friends and ask them a few questions. They are brothers; the older one is Nigel’s age, and the younger one is Aidan’s age. Here are their combined responses:

1) How long have you known Nigel?  3 years; 7 years

2) What have you heard or been told about autism?  That just because they have autism doesn’t mean they are stupid. In fact, in some ways they can be smarter than normal.

3) What’s it like hanging out with Nigel?  It’s always fun; awesome - he’s super smart.

4) What ways have you noticed Nigel acting differently?  He gets up close to your face (not all the time).

5) When you’ve witnessed Nigel have what’s called a “meltdown” - become upset about something - how does that make you feel?    It makes me feel sad; sad and guilty.

6) Have you ever witnessed other kids giving him a hard time or bothering him?   Yes; yes, many times.

7) What’s the most difficult part about having an autistic friend?   Getting him to understand; not to get frustrated with him when you want to say something and he keeps cutting you off.

8) What do you like about having an autistic friend?   He’s super smart and has a great imagination - super fun to play with; it’s never boring!

9) Any advice you would like to mention for other kids who might meet someone with autism, or anything else you’d like to add?   Be patient!

A big thank you to Nicholas and Tyler! I appreciate your time in answering my questions, but I appreciate you so much more for being such good friends to Nigel (and Aidan). Our family is very fortunate to know yours. Also, many thanks to your mom, Cheryl, for facilitating the interview. You guys are the best!

A few weeks ago I wrote a post regarding a survey (taken by Natural Learning Concepts) that I found to be discussion-worthy. They recently posted the results of another interesting survey:

Over 5,000 people have been asked this question.  The results of the poll are:

If you could pick ONLY one of these for your child/student, what would it be?

The results do not surprise me. I participated in this survey, and I did not have to think twice about what I answered. As important as #1, “a superior educational program with well-trained staff,” is for any special-needs child, as a parent, I chose #2, “a really good friend - always,” as what I wish for my autistic son.

Numbers 1, 3, and 4 help our children to succeed, and to feel comfortable and capable. But #2, far more than the other three items, helps our children to feel valued. To feel like they matter. And, in a roundabout way, feeling that way will help them to succeed, and to feel comfortable and capable. Having real friends boosts self-esteem like nothing else. I have seen how happy my son feels when he is accepted and appreciated for who he is, and if I had to choose one thing out of that list for him to have all of his life, that is it. A really good friend - always. We should all be so fortunate.

I am excited to announce a new feature here at Teen Autism - the Social Group Bulletin Board! For several months now, I have been receiving emails from parents and grandparents requesting information about social groups for ASD teens. After researching their areas and responding to them individually, I have devised a system that I hope will be helpful for everyone.

If you live in an area that does not have the resources of a large city (with ASD schools and day camps that have social groups), you can start your own social group with the help of Teen Autism. Just email socialgroups@teenautism.com with your name, area, and how you wish to be contacted (phone or email). I will respond to confirm all of your information, and then I will post it on the Social Group Bulletin Board. Anyone who visits TeenAutism.com and is interested in social groups can check the bulletin board for contact information.

Connections are essential to building self-esteem. Think of your friends and the people to whom you’re closest - you probably have a lot in common with them. That’s why I feel it’s so important for ASD teens to be able to connect with others like themselves, should they so desire. As Nigel says of his friends, “They understand my difference.” And I can tell that means the world to him.

Nigel’s Obsession of the Week, besides his impending Terminator Halloween costume, is the ‘80s movie The Goonies. He was introduced to this classic a few years ago and has loved it ever since. Being an extrovert, Nigel loves the friendship theme of the movie, and being autistic, he appreciates the befriending of the misunderstood, cognitively challenged character, Sloth. According to Urban Dictionary, “goonie” means “outcast” or “geek,” but also “good friend or homie.” Nigel considers himself a goonie.

After school today, he invited his NT friend Riley over to watch the movie with him. Nigel and Riley have been friends for six years, and I’m sure he has seen The Goonies with Nigel on several different occasions. Yet Riley comes over and hangs out, accepts the fact that Nigel talks and narrates throughout the movie, and just lets him be who he is. And of course, that is what good friends do. We all have our quirks, and some require a little more patience than others. But for a child, now a teen, to take it in his stride and recognize the needs of someone who’s different and care about him and spend time with him in spite of some pretty riotous quirks, well, simply put, I just love him.

They were in the kitchen at one point, taking a snack break, and I overheard Nigel say, “Do you think we’re like The Goonies? You know, friends in the same neighborhood having adventures?”

“Yeah, we are,” Riley said, biting into an apple.

“Because I’m a goonie, but you understand my difference.”

“Yeah, Nigel, I do.”

Sometimes, my heart just overflows.

I talked to my boys last night! Of course I love to talk to them anyway when they’re in LA, because I miss them, but last night I was excited to hear about Nigel’s first day at the Village Glen Day Camp. It sounds like he had a great day! I asked him if he met any kids his age and he mentioned three boys that he had met, with their names and ages. One of them is also thirteen, which made me so happy for Nigel, since the NT kids his age are socially more mature than he is. I’m so glad that he met someone his age who is also at his developmental level, someone he can just be himself with.

Next I asked him what they did at the day camp. In his typical flat, but beautiful, voice he told me how they “played inside games because it was hot outside.” Also typical is having to drag information out of him if he is talking about anything other than an OW.

Me: What kinds of inside games?

Nigel: Charades and board games.

Me: Which board games?

Nigel: Clue and Battleship and Jenga.

I wanted to ask how he did with Charades, but I figured he wouldn’t know how to answer that. Instead, I smiled, visualizing him playing with his three new friends.

Me: Did you like your first day?

Nigel: Yes, I had a good time.

A huge thank you to Alexis and Niika for making this possible!