Saturday, December 18, 2010

Make Me Laugh Please!

As humans, we like to laugh.  We value wit.  We are drawn to people that we think are funny.  It's a compliment when someone tells us we have a good sense of humor.

Because we are not robots and are unique individuials, what is funny is a very subjective thing, viewed through our own individual prism influenced by everything that is unique to our life.  Culture, heritage, age, ethnicity, social economic status and where we live, all of these things and more, combine to give us our take on what is humorous.  What makes us laugh depends on our life experience and circumstance, and what I think is funny may be perceived as rude or insulting to someone else.

Jacob loves to be funny and he tries very hard to make me laugh.  Two of his favorite shows are Family Guy and South Park, which is pretty typical for the kids in his culture.  Yeah, I know what you are thinking.  Those shows are pretty inappropriate and politically incorrect.  But as any parent of a teenager with autism will tell you, short of violent video games or inappropriate behavior that would get him in trouble with the law, you'll encourage anything that will help your child fit in with his peers.  Both Family Guy and South Park are popular with teenagers, and though these would not be my first choice as shows for Jacob to watch, it gives him something to connect to with his classmates.  Fellow parents - back me up on this please!

In an effort to connect, Jacob likes to share with me stuff that he hears on these shows that he thinks is funny.  Sometimes I laugh, but most times the jokes are out of context and the humor is lost.  It's taken alot of time explaining this concept to Jacob, and I think he's finally starting to understand.  But for the longest time, he just couldn't get why that if he repeated something that was extremely funny to him why it wouldn't be funny to me as well.

I remember when Jacob was an adolescent, he liked to tell the same jokes over and over again. I can't remember any of them now, but there were many. As we know, after a punch line is revealed, a joke isn't funny any more because the element of surprise is what makes a joke funny.  He actually asked me once if a joke is funny why wouldn't it be funny if he told it a second time.  Luckily, he did finally grasp this concept , but it took a really long time for it to finally sink in.  At the time, he was around 10 and enrolled at an NPS school for children with social communication disorders.  Translation: he was surrounded by students just like himself so his quirkiness didn't stand out.  If instead he had been mainstreamed in a public elementary school with typical peers, repeating the same jokes to his classmates would have been viewed as annoying.  Maybe not, but I'm guessing that he probably would have been an easy target for bullying, and that's something I can't and don't want to imagine. 

The main reason for Jacob's lack of understanding why others don't like his humor is because he don't have what is called "Theory of Mind".  This is a common deficit for people on the autism spectrum.  "Theory of Mind" is the ability to understand that others have beliefs, desires and intentions that are different from one's own.  People with autism think in very black and white terms and are rigid in their belief systems.  Because they are concrete thinkers, anyone that disagrees with them is automatically wrong.  This is a big reason why adults with autism have a difficult time in the work place and in personal relationships.  Think about it.  If you're always right, why should you listen to your boss if you don't agree with him.  If you can't understand another person's point of view, how can you ever repair a disagreement in a relationship.  Being firm in your convictions can be a good thing, but it's a huge problem if you tell your supervisor or your professor he's an idiot or you can't ever figure out why you should do something to make up with your girlfriend when the only way you can resolve the disagreement is if she admits she was wrong.

The humor goal is not something you can write as an IEP goal.  It's a social skill that your child has to learn on his own.  It can't be meaasured on a standardized test.  You either have it or you don't.  And since we like being around people that make us laugh, people with autism have a really tough time in this area of social communication.

Do I ever expect Jacob to the be the life of the party, the guy that people are automatically drawn to because he has a great sense of humor?  Or course not.  I've learned to set my sites on something must more doable.  Like him not being annoying.  That goal I think he's accomplished most of the time.

Tuesday, December 7, 2010

The Me of 13 Years Ago

This is my December contribution to Hopeful Parents.

The life of a Mom of a teenager with autism is many things. At times is can be challenging. Other times it can be frustrating. Sometimes it can be both at the same time. But one adjective I would never use is boring. This is never a word I would use the describe the life in our home.

13 years have passed since the day that I heard the words "Your son has autism", and now  that day seems like a distant memory. I've gained much wisdom through the years, and whenever possible, I try to help other families as best I can. I'm President of the Autism Society of Los Angeles. I’m starting a support group in my community for parents of children with autism. In a very real way, Jacob's diagnosis has given a purpose to my life that wouldn’t have happened had he not had a disability.

As a young child, Jacob’s behavior was very challenging, and sometimes, I didn't know how I would manage to get to the end of the day. But now, I'm going to write something the me of 13 years ago would have never thought was possible: I miss the challenging days when Jacob was young. It's true. I miss my gorgeous blonde-haired, blue-eyed little boy and the times we shared. I miss the afternoons when we made pillow forts on the sofa. I miss the days when we took trips to the Allied Model Train store. I miss the mornings when I watched him play at the park. It was a time for planning birthday parties, for accompanying Jacob on fieldtrips, and for volunteering in his classroom. And it's not just the fun stuff that I miss, but the tough responsibilities as well. I miss having to complete the daily assignments from his occupational and speech therapists. I miss the hours I spent assisting Jacob complete his classroom assignments. I miss the daily consultation with his behavioral aide to see how Jacob managed each day at school. At the time, I know the responsibilities were I exhausting and many times overwhelming. I guess what I really miss are the days when Jacob needed me so much.

If the me of 13 years ago could read my words today, she would have thought I was crazy. How could I miss the hours and hours I spent helping Jacob complete his daily sensory exercises? How could I possibly miss the exhausting time it took to help him finish his second grade book report on Abraham Lincoln? And how in the world could I miss the times we rushed through the Natural History Museum because of Jacob's inability to focus on the exhibits? Not that there wasn’t difficult stuff during this time as well. I experienced a failed marriage and the collapse of my business. I was a single-mom supporting a child with a disability with no financial or emotional assistance from my family. I know there were rough times, but today I don't focus on those struggles. What I remember most is my beautiful son and the important role I played in his life.

Of course, I still play an important role in Jacob's life, but that role is very much different. Jacob prefers to be alone, though it's my job to see that he doesn't hole himself in his room with his television and his video games. He completes his homework on his own and manages his assignments independently, though I still keep in touch with his teachers to be sure all is well at school. Now, I wonder about his future after high school and hope he'll be able to move from home one day so he can live a life independent from me. When he was young, I used to worry how he would manage at school each day. Now I wonder if as an adult, Jacob will hold job, have close friends and meaningful relationships, and be able to support himself in his own apartment. Though I know the me of 13 years ago struggled to make sure Jacob’s needs were met, the concerns of the early days of his diagnosis don’t seem so challenging today.

Hindsight is everything and remembering the good parts of the past while forgetting the difficulties is a quality that makes us uniquely human. If I could, would I relive my life with Jacob as a youngster? No, once was enough. But am I happy that my memories of the time growing up with Jacob bring me joy. Absolutely!

Saturday, December 4, 2010

Community

The word community can mean many things. It can be the neighborhood in which you live. It can be the school that you attend. It can be a group of people in which you share a commonality.

Like it or not, having a child with autism automatically makes you a member of the "Autism Community". Like any community, it's members are individuals with their own way of interpreting the world. But unlike many other communities, the way those individuals interpret their world varies widely depending on the abilities of the individual.

Autism is considered a spectrum disorder which is why you'll hear it referred to as Autism Spectrum Disorder or ASD. It's a wide spectrum, and the individual's place on it is determined by the person's level of functioning. Generally, those that are non-verbal and severely impacted with co-concurring conditions are labeled as low-functioning, and those that are verbal with an average or above-average intelligence are labeled as high-functioning. Classic autism falls on the low-functioning end of the spectrum. Asperger’s Syndrome and PDD-NOS, which stands for Pervasive Developmental Disorder Not Otherwise Specified, are labeled as high-functioning. Jacob is high-functioning because he's of above-average intelligence, he's verbal, and he attends a public high school. Temple Grandin, who is one of the most famous people with autism and has gone on to accomplish amazing things in her life, is of course high-functioning. But when she was diagnosed at age 4, when she was non-verbal and highly impacted by her disability, she would have been considered low-functioning.

Because of this diversity, many times it is difficult to find unity within the autism community. Parents of a young child that is non-verbal, unable to communicate, and severely impacted with co-concurring conditions navigate a completely different world than I experienced with Jacob. With the help of a one-on-one aide, also referred to as a behavioral consultant, behavioral therapist, or paraprofessional, Jacob was able to handle a typical preschool and public elementary school. Without the aide, his behaviors would have been too disruptive for the classroom. I was extremely lucky that our public elementary school understood Jacob's needs and offered a lot of support. I was also very lucky to have some skilled and caring aides that worked hard to help him. There are not enough words in the universe to thank all the people that supported Jacob during his early educational years.

In regards to the terms "high-functioning" and "low functioning", I think that these labels give no clue of how capable the person is or any indication of the person's strengths. Especially when saying someone is "high functioning", it gives an impression that the person will do just fine. There are many stories famous people with autism that succeeded in life, so it’s understandable to think that anyone that is high functioning can do the same. But this isn’t true. Just ask any parent of a high-functioning child just how fine their child is. If you give them an opportunity, they’ll share many reasons why they are worried about their child’s future and how exhausted they feel at the end of the day. How their young son resists any type of change and has a complete meltdown whenever he is frustrated. How their adolescent daughter has no friends and feels alone and depressed. How their adult child can't keep a job or live independently. Many of them will tell you that due to the daily challenges faced by their child, it's a struggle to get through the day.

The autism community is also extremely divided on a number of issues. And like a person with autism who has very black and white thinking and cannot take into account another person's perspective, the beliefs of some people are not open for debate. The discussion about vaccinations causing autism divides many people. For me, this topic within the autism community is like religion or politics which we know are subjects that you don't discuss in polite company. I haven't focused a lot of attention on this matter one way or the other. I always felt that my time was better spent focusing on what Jacob needed and then researching on where to find it.

Appropriate therapies and treatments are another source of debate. Most people within the entire autism community agree that the most appropriate way to support a person with autism are with therapies and services that are specific to the needs of the individual. This can include everything from occupational and speech therapy, special diets, and behavioral interventions. What works for one person with autism may not work for someone else. But here again, there can be disagreements on what is the best. For me, I went with my instincts and did what I thought was right at the time.

There is also the debate about curing autism verses the neuro-diversity movement. For those that think autism is a disease, autism needs to be healed or cured so the person can recover. There are a lot of people that are in the business of curing autism, and most of these services are very expensive. More times than not, these services and treatments are not covered by insurance so families spend a lot of money hoping that their child will get better. I can completely understand how a parent of a child that can't communicate, has extreme health issues, and is highly impacted by their disability would want to cure their child. As a parent of a child with a disability, I know the feeling of wanting to do whatever it takes. The other side of this debate involves the neuro-diversity movement where it is believed that the differences of each person should be recognized and respected, that people with autism should be accepted for who they are and not be judged by how different they might be, and that autism is a neurological disorder so taking away the person's autistic traits would remove a key part of the person’s personality. Many adults with Asperger’s Syndrome are extremely proud of who they are, and they wear their Aspie badge with pride.

No matter what the debate, be it vaccinations, treatment options, or neuro-diversity versus a cure, I think we are all entitled to our opinion and deserve respect no matter if it is in agreement with out point of view or not. Unfortunately, I find the attitude is usually "you're either with me or against me" regarding any differing opinions. I’m more of a mind to say let’s just agree to disagree, but sadly, many times my words would be very soundly rejected.

As a parent of a teenager who has been dealing with autism for over 13 years, I have a point of reference particular to my own situation. I’ve done a lot of reading, I’m met many people, and I’ve traveled my own journey. I know more than some people and not as much as others. I have my own opinions. But the one topic within the autism community on which I am an absolute expert and am 100% correct is Jacob. Every parent within autism community can say the same in regards to their child as well.

I don’t think that absolute agreement on every topic within the autism community will ever achieved, nor do I think it is necessary. But I do hope it will one day become a place of acceptance without judgement. A place where all viewpoints will be welcomed and not argued and where differences will be embraced and not discouraged. A place where I can say this is what I believe without a fear of being called wrong, stupid, or ignorant.

As the song goes, What's So Funny About Peace Love & Understanding. I think every community on earth needs more of these qualities, and the autism community is no exception.