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.


Wednesday, November 24, 2010

Mom, I Hope You Feel Better

Experiencing my son's concern about my well-being.  Priceless.

Yep, it's the little things in life that make it worthwhile.  Making sure the family is healthy.   Sharing a good meal at dinner.  Watching a favorite TV show with Jacob.  All good stuff. 

I've been suffereing from a nasty cold for almost two weeks, and Jacob's seen me feeling stuffy and tired.  Come 9:30 each night, and I've been ready for bed.

So, when I was on the computer right before going to sleep, Jacob walks into my office and says "I hope you feel better Mom", it was music to my ears!

I've spent so much time working on empathy with Jacob.  Explaining why manners are important.  Insisting  on hearing "please" when he makes a request or "thank you" when I've done something nice for him.  Letting him know my displeasure about something that he may have done or said that wasn't to my liking .  Literally, it's been years and years and YEARS of working on this stuff.

I know Jacob loves me, but his disability makes showing emotions tough.  Maybe he'll never be the most demonstrative guy, but last night, I saw he was trying.

Progress is a good thing!

Wednesday, November 17, 2010

How Many Friends Do You Have?

I'm become somewhat addicted to Facebook as a means of self-expression. When I find interesting articles or sources of information, I like to post it on my Facebook page so I can share with all 257 of my Facebook "friends". I also like to repost on my Facebook page interesting articles from these same friends.

Of course, only a handful of these Facebook friends are actual friends. The rest are people that I used to know and have reconnected, I've "befriended" through Facebook or are acquaintances that I've met in actual real-life face-to-face interactions. Hi, nice to meet you. You're on Facebook, great, let's be friends! It's a step up from never having met in person, but it's still pretty artifical in terms of a real friendship.

As any parent of a child with an ASD knows, friendships are a precious commodity. I remember I did a lot of facilitating in this area for Jacob when he was young. I enrolled him in social skills classes. I got to know parents of his classmates so I could arrange playdates, then I monitored the playdate so it would be a successful event for both Jacob and the friend. I no longer facilitate friendships for Jacob because at 17, this is something Jacob has to do for himself.  It's just not cool to have Mom doing this for him at his age.

I think most people use the word friend much too loosely.  Real friends are people that you can count on no matter what. They bail you out of jail in the middle of the night. They bring you food after your Dad dies. They take you out to dinner when you've been fired from your job. They get drunk with you after you've dumped by your boyfriend.  I'm lucky that I have actual friends that would do any of these for me.

I was thinking about this while reading an article that that was posted on Facebook by a friend, a fellow autism Mom and a professional in Tennessee that works with individuals with autism, called "7 Reasons the 21st Century is Making you Miserable" from the website Cracked.com.

The author is somewhat "in your face" as my Facebook friend mentioned when she posted the article, and the author, Bill Wong, is a bit of a potty mouth. But he makes some excellent points about how most people have very few real friends in which they can trust with private information.

Here is a summary of the 7 reasons why current society is making you miserable:

We don't have enough annoying strangers in our lives.  We used to live in towns where face to face interactions were the norm, and even though we didn't like everyone, we learned to cope with people we didn't like. This coping mechanism is important, because learning how to live with annoyances helps us to to become more tolerant of differences in others and helps us to develop the skill of being more tolerant.  Now that we can shop online or talk on our cell phones in public, we have numerous ways to avoid all undesirable interactions.  As a result, many people are much quicker to judge and less likely to be empathetic.

We don't have enough annoying friends either. I love this line from the article. "Peacefully dealing with people you can't stand is society."  By having only indirect interaction with people, we miss the ways that we learned to cope with the differences in others. Even though a friend has a different taste in music or an opposing political viewpoint, there is comfort in needing to be with others beyond common interests.

Texting is a bad way to communicate. More than 40% of what you say in an email is misunderstood, which means only 60% of our face-to-face interactions are understood.   There are lots and lots of ways to miscommunicate in the universe of indirect communication.

Online communication only makes us lonier. This is really tied into the last comment. 96% of our communication is non-verbal,  I'll repeat that sentence for emphasis: 96% of our communication is non-verbal! As the author says, the human ability to absorb moods is a kind of human osmosis. When we text or email, this is stripped away.

We don't get criticized enough. I'm going to directly quote Bill as he said it better than I can paraphrase: "Criticism is someone trying to help you, by telling you something about yourself that you were a little too comfortable not knowing. E-mail and texting are great tools for avoiding that level of honesty. The person on the other end can't see your face, can't see you get nervous, can't detect when you're lying. You have almost total control and as a result that other person never sees past your armor, never sees you at your worst, never knows the embarrassing little things about yourself that you can't control. Gone are the common quirks, humiliations and vulnerabilities that real friendships are built on."

We're victims of the outrage machine. Because our media sources are so fractured, we can now select information from sources that only agree with our point of view. If you want conservative and sensational, you watch Fox News. Liberal and factual, you watch MSNBC. We used to have only three television networks, and this was as recent as the 1980s.  Now there are hundreds of sources via television and the internet.  In  reality, there is no longer a "mass media".  We view the same news, but it is interpretted through a prism that only agrees with our way of thinking. We can't even acurately agree on what to disagree on anymore so our differences become irreconcilable. As Bill says "That constant feeling of being at bitter odds with the rest of the world brings with it a tension that just builds and builds."

We feel worthless because we are worthless. Online friends demand less of you. Real-space friends need you, and you need them, and they do stuff that annoys you, and you annoy them. But to be needed and annoying is to be human. Take away this element, and you strip away the basis for any friendship. As Bill says, "Self-esteem and the ability to like yourself only come after you've done something that makes you likable. You are a social animal and thus you are born with little happiness hormones that are released into your bloodstream when you see a physical benefit to your actions."  In order to like yourself, you have to do stuff that contributes to the world in some meaningful way, including helping a friend, taking care of a pet, or cleaning the house.  The act of doing is the essense of being human.

I was very struck by this article and I got me thinking alot about how it relates to people with autism.

So, with that in mind, let's look at the checklist of issues from this article. All of these are HUGE for individuals on the the autism spectrum.

Inability to read non-verbal communication
Inability to cope with the differences of others
Inability to understand what others are thinking
Inability to understand why helping others is important


I don't want to make too large of a leap. But, looking at this list and taking into account what Bill Wong has written, are we all becoming more autistic due to the impersonal nature of our society?

I wish I had money to do a research project on this topic.

Thursday, November 11, 2010

How do you Teach Motivation?

This was my last blog for Hopeful Parents. Enjoy!

The lives of parents with children on the autism spectrum are very busy. They spend hours and hours researching and finding the treatments that would be most appropriate for their child. They schedule meetings with doctors and professionals. They spend a lot of money on therapists. They arrange playdates, and they taxi their child to appointments. They hope that what they're doing will eventually prove to be worth the time, money, and energy.

This was my life when Jacob was young. Now he's 17 and by all accounts doing well. He started at public high school this year and there have been no issues. His report card came back with good grades. All of his teachers say he's engaged and active in the classroom. So I guess all the hours of driving, researching, and meetings have paid off. Or have they?

When I look at Jacob, I see a young man with so much potential. When he puts his mind to something, he'll do it. To make sure he'd be engaged at his new school, I offered a $100 bribe, ops, sorry, I meant to say a "positive reinforcement", if he got straight A's on his first report card. And this seems to be working: on his mid-semester card, he got As and Bs. All of his teachers gave him enthusiastic remarks about his efforts in class. He hasn't expressed it in words, but I think he's proud of himself because he's working hard and getting good grades.

But would have happened if I hadn't dangled a hundred-dollar bill in front of him? Would he have worked as hard to get the good grades if he wasn't being rewarded for it? Is the simple pleasure of doing his best and taking pride in his work something he can't do without getting something in return?

In the early years of Jacob's diagnosis, the exercises and assignments that therapists and teachers gave me were easy to implement. Speech objectives, sensory exercises, and homework help, no sweat - just tell me what I need to do and I'll make sure it's done. Play with Jacob for 1/2 each night to help him develop imaginative play - check, done. Put pillows on Jacob and apply pressure to help calm him - no worries, I've go it covered. Book report due next month - fine, we'll start reading together each night to make sure that it's completed on time. But an activity to help him with motivation? No therapist is giving me an assignment to help him meet this objective.

For me, this is one of the most frustrating things about having a child on the higher functioning end of the autism spectrum. As a parent, how do you teach your child to be motivated to do well in life? How do you teach a teenager to want to investigate their world instead of being content to stay home & watch movies all day? How do you teach your child that the rewards of helping others is something money can't buy?

Of course, I know I can't teach motivation to Jacob. This is something he'll have to develop on his own. So I guess a better question is how do I help Jacob develop motivation? I'm doing my best to set a good example, hoping some of it will rub off. But I'm not sure this is the type of thing that works by osmosis.

Only time will tell if Jacob is able to master the motivation objective.

Saturday, October 23, 2010

Night of Too Many Stars and My World so Long Ago

Last night on the DVR, I watched the "Night of Too Many Stars: An Overbooked Concert for Autism Education" hosted by Jon Stewart. It featured featured lots of my favorite funny people and I laughed a lot. The event definitely benefited a wonderful cause.

The actual show was taped at the Beacon Theatre in New York, and the program was broadcast on Comedy Central as a telethon so people could call in with donation pledges. It also featured pre-taped segments highlighting serveral schools and programs located across the country that specialized in serving children with autism. All looked great, and it seemed like the people from these schools and programs deeply cared about and were sincere in their efforts to help. A few parents were interviewed as well and they expressed their gratitute that their child was directly benefiting from the help that these programs offered.

I know from personal experience how difficult it can be to find the proper educational setting for a child with autism. Up until second grade, Jacob attended our local public school and was fairly successful. But the third grade classroom was too overwhelming, so he left mid-year to attend a non-public school that specialized in educating children with social communication disorders. I was lucky because in 2001 there were no other viable placement options that were appropriate for a higher-functioning child on the autism spectrum. Though it was not a bad experience, Jacob eventually left the non-public school in 10th grade and is now enrolled in our local public high school. He's been there for nearly two months, and so far, so good. His teachers are giving good reports and he doesn't seem to hate it. Culver High has a lot of clubs, and he's joined the Anime Club that meets once a week during lunch. Jacob is really good at building figures with Bionacle Lego kits, so I'm hoping he'll also join the Robotics Club, but he says he'll only join one club at a time. This is a typical Jacob response but at least the Anime Club is a start.

For the Too Many Stars event, I was happy to see something so high-profile raising awareness about the issue of autism. It was great to see that more and more programs are being offered to address the educational needs of students on the spectrum. Judging by the increased knowledge and these expansion of programs, times have certainly changed in the 13 years since Jacob was first diagnosed. The day that Dr. Kaler told me Jacob had autism, it now feels like that happened a lifetime ago. It's hard to remember what my life was like when autism wasn't a part of it.

It's true. There actually was a time when autism was not part of my life. Now, it feels like I'm immersed in it. I'm President of the Los Angeles chapter of the Autism Society, and Principal of a school for children with autism as well as Jacob's Mom. Of course, I have other interests, but there doesn't seem to be much time, and at the moment not any money, to do much else. Each day goes by so fast, and I never get an opportunity to finish all the items on my daily list of things to do.

Autism is a big part of my life, and, as much as this is not what I envisioned my life to be when Jacob was first born, I can honestly say the journey has been extremely worthwhile. I never planned my life or my ultimate destination. I can't recreate the past, so I have no idea where I would be now or what I would be doing had Jacob not had autism. Maybe my marriage wouldn't have failed. Because Jacob was so adorable as a youngster, maybe he would have been a top child model or successful actor. He's smart, so maybe he'd be looking at scholarships to attend a top ivy-league college when he graduated from high school. It really makes no difference as these are realities that were never meant to be, so I can't miss what I never had.

It certainly felt good to laugh last night, and it was great to see so many people donating so much to such a worth cause. My own personal connection to autism may have deepened this appreciation, and I think that's a good thing.

In my world so long ago, this would have never seemed possible.

Thursday, October 7, 2010

It's Raining Outside

I contribute a blog entry once a month to the HOPEFUL PARENTS website, and this is what I posted for October. My last blog, Can We All Just Get Along, was not well received by several people in regards to my comment about how parents of higher functioning children don't have an easier time than those of lower functioning children, so I thought I should post it here as well.

It's a cold, rainy day in Los Angeles and a typical afternoon in our house. Jacob and I will interact in a bit, but right now, he's in his room and I'm in front of the computer.

Jacob loves to stay home, and he couldn't be any more different than me at his age. When I was 17, the last thing I wanted to do was hang out with my mean and emotionally unavailable mother. I had places to go, things to do, people to see. Jacob's favorite place in the world is home, which I have to admit I kind of like. I know where he is, and I know that he is safe.

But sometimes I wonder will he ever be motivated to go off on his own? Will he ever have a desire to try new things? He has two friends from his previous school and for him that's enough. He doesn't want a girlfriend. New experiences are of no interest. Watching the same movie over and over again is fun. Hanging out with his mom is not an embarrassment.

When I look at Jacob, I see so much potential. He's smart, but he doesn't apply himself like I think he could. He's a good looking young man, but jeans, sweats and a t-shirt are just fine as his everyday wardrobe. He's kind hearted, but he's not one to want to help others.

Because so much of my energy has been focused on the present and getting him the services that he needed, I gave up having any expectations of him a long time ago. He is who is his. He's Jacob. He's low energy. His speech is monotone and not very expressive. He has limited interests and doesn't like new things.

When I think about Jacob's future, I find myself in an in-between place of hope and worry. On the hopeful side, I see Jacob in a job he loves, friends he likes and a home of his own. On the worry side, I see a young man that is content in his aloneness with no desire to change. I see Jacob's future where he is struggling to pay his rent. I see him as an adult that is ill-equipped to successfully live his life.

Am I wrong in wanting Jacob to change, to be ambitious and to want to live his life to the fullest? Am I wrong to judge my son because he's not like me in wanting to have a lifetime of adventures? Or should I just accept that I'm fortunate that Jacob isn't in trouble with the law or being bullied in school?

I know in regards to the last question, some parents would think that their lives are much more difficult than mine. I know that the parent of a child that can't communicate or express his feelings has immense struggles. I can talk to Jacob and he can verbalize his thoughts, no matter how negative these might be. I can only imagine how hard it would be to never be able to have a conversation with him. So yes, compared to the difficulties of a parent of a highly impacted child, I am fortunate. But even though Jacob's disability may not be as severe as that of another child, that doesn't mean my concerns for Jacob are trivial. I completely respect and understand how hard it is for the parent to have child that can not reciprocate with any type of interaction. My heart aches for any parent that will never hear their child say the words I love you or has a child with behavior so severe that it requires constant monitoring. I run a school for children that are very impacted, some that are non verbal or unable to express any emotion. I see each day how hard it is for these parents. But because Jacob's disability isn't as severe does not mean that my feelings of concern for Jacob aren't valid. I think that when we as parents compare the severity of our own child's disabilities to the children of other parents, it serves no purpose. Acknowledging that we all have feelings of worry and concern and supporting each of us with the struggles that we as parents face each and every day, I that think will make our community stronger and all parents within our community feel less alone.

So yes, I am fortunate. Jacob is a wonderful young man, and I completely accept him as he is. But am I content with this? I think I am, but secretly, I do think that I want more. Maybe it's fair, maybe it's not, but what I think doesn't really matter because Jacob is the only one that can determine how happy he really is.

The rain has finally stopped, and it's a typical evening in our house. Time to eat dinner with the Jacob then we'll watch a couple of TV shows. It may not be the ideal way that all families share experiences, but this is the way that Jacob enjoys interacting with me. For that, I am happy.

Sometimes it's the simplest things that bring us the most joy.

Monday, September 13, 2010

Can't We All Just Get Along?

One of my recent blogs, What I Believe and What I Know, was featured on the Autism Speaks blog, In Their Own Words. I began my essay with a short description of all the activities that Jacob and I used to enjoy when he was young. My goal was to stress that sharing quality family time together is beneficial for both parents and children. My essay went on to explain my thoughts about having a child with a disability and how I’ve come to understand the many ways in which Jacob's disability has given me the wisdom to see beyond it.

Autism Speaks also features the blog on their Facebook page; for my essay, over 500 people hit the "like" button and almost 100 people posted positive reveiws in the comments section on both Facebook and In Their Own Words. “Thank you for sharing”, “”I really connected to your words”, “This is a wonderful testimony”, and “Beautifully described” were just a few. Everyone loved my essay, everyone that is except for one reader named Andy. He wrote, and I'm quoting his words exactly, “I think this post is insensitive. Trips to Europe, museum visits all over the world, actual conversations with your child. So few families are that fortunate.”

Wow, I thought. That was not my intension. Of course, my first impression was that Andy must be on the spectrum; why else would he respond so negatively when over 90 comments were so positive. The Centers for Disease Control estimates an Autistic Spectrum Disorder for boys is 1 in 90, so I figured that 1 negative comment out of nearly 100 positive ones was proportional to the incident of Autism in the general public. But I as further contemplated Andy’s words, I thought that was a more serious issue within the Autism community.

As any parent of a child with Autism knows, individuals on the spectrum present their disability in very different ways. On one end, there are children that are severely affected, unable to communicate and many times having co-concurring conditions which leave them highly impacted. Individuals on the other end are labeled as having Asperger's Syndrome or high functioning Autism. As young children, they look much like their typical peers. They may do well academically, but put that same child on the playground where he has to interact with his neurotypical peers, and he's lost. He doesn’t understand social cues. He may not be able to read facial expressions. He's the child wandering around on the playground by himself with no friends. Hopefully, with intervention, the child will acquire socially appropriate behaviors. Unfortunately, even with these interventions, a large majority do not transition successfully into their communities after they exit high school or college. This is true across the spectrum, no matter what their diagnosis, their level of functioning, the type or the amount of hours of services they've received. As young adults, the majority lack meaningful employment or close friends or personal relationships. And a very small number, as little at 5% or less in some studies, live independently.

I know firsthand the obstacles of raising a child with a disability. I know how frustrating it was when Jacob had a difficult time in the classroom. I remember how rigid his behavior could be. I was lucky he liked to hug and snuggle. I can recall how great it felt when Jacob had a great day at school. I also remember the sweet child that he was and still is, though it is now masked as that strange creature called a teenage boy. But do I feel superior because Jacob is less impacted than another child with Autism? Am I happier that Jacob can speak because another child with the same disorder is non-verbal? Of course not. If anything, I feel great empathy for those parents that are enduring more difficulties than I faced. I completely sympathize with how tough it can be for the entire family when one member has Autism.

I saw this same sentiment again in a recent post on that same Autism Speaks Blog. The essay was written by an individual with Asperger's Syndrome in response to the way the American Psychological Association (or APA) is proposing to diagnose Autism in the next addition of the Dianognostic Manual of Mental Disorders (or DMS). For those of you unfamiliar, the DMS the book used by professionals to diagnose psychological disorders. In the current edition of the DMS IV, Autism diagnoses are now separated into several subcategories one of which is Asperger’s. In the proposed draft of the DMS V, which is slated to be published in 2013, the APA will be lumping all of the subcategories into one diagnosis which will be Autism Spectrum Disorder. In other words, all Aspies will no longer have Asperger’s Syndrome; they will have Autism.

As an Aspie, she was very opposed to this change. According to her, “it will serve as a mockery to those who are severely affect by Aspergers, and it will attack the identity in which many Aspies take pride.” She went on to say that the Asperger’s label gives an impression of intelligence and ability and that people with Asperger’s are brilliantly gifted and capable individuals whereas people with Autism are thought of as needing institutionalization and not able to live independently. She added that taking away the Asperger’s diagnosis would dangerously stereotype Aspies and the lack of the label will interfere with their ability to be employed or be promoted in their occupations because they will now be associated as having Autism. She supported her opinion with many more details on how the APA was wrong to take away the Asperger's diagnosis, but I'm sure you get the idea. Maybe I was misinterpreting her comments as Andy has done with mine, but it seemed to me if the author thought of herself as superior because she has Aspergers and not Autism.

In my opinion, it is very sad that that Autism Community is so divided. Acceptance, not segregation, should be the goal for all people regardless of their differences. I know I do not look down upon parents of a child that is more impacted than Jacob. I do not feel superior to parents of non-verbal children because Jacob has the ability to communicate. I don’t think that it is better to have a child with Asperger’s than it is to have a child with Autism. I hope that all parents wwill be able to remediate the core deficits of their child’s disability. I want all children, because of their abilities and regardless of their disabilities, to ultimately have the chance to live happy, healthy and productive lives. I want every child to succeed as I hope Jacob will be able to do one day.

As the saying goes, the grass is always greener on the other side. Unfortunately, this is not true when you have a child with a disability. It is true that a more highly-impacted child will take a much longer time to show progress, but that doesn't mean the parents of higher-functioning children will have an easy time raising thier child.  No matter what the issues, it's an uphill battle every step of the way, and the journey that each of us must undertake bears much weight on our shoulders.  I too have faced many challenges with Jacob, but I also feel blessed to him in my life even though at times it was very, very difficult. I don’t regret for one moment what both he and I have experienced. His disability hasn't been something I wanted in our lives, but he is who he is, and I love him no matter what, always and forever.

Jacob will be 17 in just a few weeks, and I've seen tremendous progress since his initial diagnosis at age 3 1/2. For that I am truly thankful. But would my happiness become source of jealousy of a parent whose child hasn't been so successful? I certainly hope not, but, unfortuately, it just might be.

Wednesday, September 8, 2010

What Me Worry?

Jacob will be 17 on the 30th, and it doesn't seem possible that he's grown up to be the young man that he is today. But here he is and here I am. He just starting at the local high school, the first time he's been enrolled in public school in almost 13 years. Me figuring out if I'm returning to college for a Masters in Social Work after graduating with a bachelors degree almost 30 years ago.

I've never been one to plot out my future in great detail, but I have set goals that I've accomplished. I graduated from college and worked in various jobs the entertainment industry. Getting married and having a child was not something I felt like I had to do, but I did by following my instincts, doing what seemed right, and then happily living with the results.

Overall, I'm content with my life. In retrospect there's not much I would have done differently. In high school, I would have been more confident and enjoyed activities I was too insecure to try, like drama and the glee club. In college because I find the study of the mind so interesting, I would have majored in psychology instead of communications. Because the of the failure of the business that Jacob's father and I started, I would have put aside much more money in savings than I did. But there aren't any major changes I would have made in any of my choices.

But when it comes to Jacob, I'm not so sure. I try not to look into the future, because with him, I don't know what that future holds. I do know that I want him to be happy. I want him to find a career that he finds rewarding. I want him to have friends, to have relationships and to get married one day, if he so chooses. I think about his future more than I ever thought about mine. But will he have a future full of all the good things in life? I don't know. And that is very scary.

I love Jacob with all my heart, and there isn't anything I won't do for him. I don't think this makes me a unique parent. I think all parents feel this way, or at least I think they should. I also don't think that as the parent of special needs child, I'm that unique either. Whatever he needed that was within my budget, I got for him. I obtained services from the school district and the Regional Center. I was always volunteered at his schools in the classroom and in the various school fundraisers and functions. I just did what I thought was the right thing to do, just as I've done with all of the decisions in my life.

So, with Jacob, I've put in many hours of planning, meeting, volunteering, worrying. Yes, worrying. Me, the one who doesn't have a master plan, who's made decisions with the instinct of what felt right, worries about the future of her teenage son. What is up with that? Since I've felt confident in the decisions I've made in my life, does this worrying really make sense?

I've spent so much of my time as Jacob's Mom making sure he had what he needed. I've coordinated meetings with professionals, emailed teachers, and involved him in activities. I've looked at placements, attended school district meetings, researched summer programs, arranged playdates. I've spent hours and hours of my life making sure that he was getting what he needed.

So, his upcoming IEP is scheduled in just a few weeks, and, for the first time, Jacob will be attending. I will be there, but this will be the first time he'll be advocating for himself. We've been discussing the meeting, and I'm letting him know that he'll need to communicate his needs. He's really motivated by money (hey, aren't we all?), so we've been talking about this alot. I'm telling him that if this information comes from him, it will have more meaning. I'm trying to get him to decide what he wants and what he'll be asking for. How successful will this be? I have absolutely no idea.

Will this be the beginning of his taking ownership of his life? Is this the beginning of finally being able to sit back and watch my son blossum into adulthood? I certainly hope so. I know I can't compare Jacob to me at his age. When I was 17, I was going out with my friends, attending to Day on the Green concerts at the Oakland Colliseum, and starting to discover the joys of partying. I gave my parents a tough time because of my behaviors, but isn't that what being a teenager is all about, separating from your family so you can form your own identity? Jacob couldn't be more like I was. He's content to sit at home and hang at the computer. I'm sure if he could, his preference would be to live with me the rest of his life. For me at 17, staying home with my crazy Mother would have been a fate to be sufferingly endured. For Jacob, this would be a comfortable existence of not making decisions and letting his Mom supply him with all the comforts of life.

So yes, I do worry. I worry about what Jacob will do with his life. I worry about what Jacob won't accomplish. I worry that all of the years of planning and preparing will have been for naught. I worry that Jacob, the once beautiful baby boy, the now handsome young man, will be alone and unemployed. I worry that I will have failed as a parent.

Does the worrying solve anything? I know it doesn't. But do I still worry? Yes, I do.

Tuesday, August 31, 2010

My Hopes and Dreams for Jacob

Jacob just showed me that if he studied, he could do well. Over the summer, he attended the AAA driving school and failed both the mid-term and the final exams. Tonight, the class instructor offered retakes of each test, and he passed both. It feels good to be proud of my son for accomplishing something. He’s never been motivated to study, and this is the first time he’s applied himself and succeeded. Next is the written test at the DMV, so he'll have to study some more to pass. That test is 60 questions and he can miss no more than 8 questions. He’ll have up to 3 opportunities to retake the test if he fails.

I’m seeing other bits of emotional growth with Jacob. It’s really nice to see him show interest about what I think and how I feel. He’s had a week to study for tonight's tests, and he's not been trying very hard. I’ve been telling him if he did his best, even if he failed, I’d be proud of him. But, if he didn't study and failed, I’d be disappointed. A couple times, he's asked if I would give him credit for just for attending the class. This was pretty big for Jacob. As is common with people with ASD, his feelings have always mattered most. It's not so much that he don't care; it's more like what he doesn't understand why everyone else doesn't think the same as he does. Being a parent can be tough, but having a child that has no interest in what I thought has been exceedingly stressful, to say the least. Especially since Jacob was an only child, his behavior became the norm in our household. I got used to things being difficult. When Jacob asked me for my approval, that showed he was vested in our relationship. That was very cool. I'm seeing stuff like this happen more and more, but I’m still getting used to how nice it feels.

Jacob calls himself “the tall silent type”, and he means it. I think this is good - the alternative would be a non-stop talking Jacob, and we all know how annoying it is to listen to someone who speaks without taking into account our perspective. I know he doesn’t want to talk about school, but when I pick him up each afternoon, I can't help but about his day. His response so far is he doesn’t have an opinion. He does say it’s boring and the teachers talk a lot. He says he’s not had a conversation with any of his peers and he sits by himself when he eats lunch. But he also says doesn’t hate it, so that's a good sign. It’s only been 2 days, so I have to give it some time and stop asking him how the day went. I know it bugs him when I do, so I guess it's my turn to take into account his perspective and respond accordingly.

I'm really trying to help him widen his interests beyond the few things he currently likes. I know the school has a variety of clubs, so I’d really like him to join one of these. Since Jacob is new to the Culver City school system, the annual IEP will be scheduled in the next month. I want Jacob to attend and explain the administrators to what he wants. My goal is to transfer the advocating to Jacob so he can start doing it for himself.

Jacob is a cool kid, so it’s nice to see the cool stuff emerge. I know the journey is still ongoing, but at least it feels more like smooth sailing than rough waters. And for that I am very thankful.

Saturday, August 14, 2010

The Great Racial Divide

When Jacob was diagnosed at age 3 1/2, I was fortunate to receive a lot of services from both LAUSD and the Westside Regional Center including speech and occupational therapy, in-home behavior support, a one-on-one classroom aide for several years, many hours of respite, and summer camp placement when school was out. Everything was provided at no cost to my family, and most were freely offered without a request from me. I think my situation was somewhat unique as some families of children with special needs that attended school with Jacob had to go to court to get some of the same services. So I was extremely fortunate that I was able to get what I needed for Jacob without much of a struggle.

At that time, we lived in beautiful and affluent Pacific Palisades, a Los Angeles coastal community situated between Santa Monica and Malibu. I'm sure the income level of the area is not much different today than it was when we moved to the neighborhood in 1994, and it may even be higher. According to the Los Angeles Times, the median household income is $168,008, high for both the city and the county of Los Angeles. The percentage of white people is high for Los Angeles county and not especially diverse for the city or the county. The median age is 43, old for the city and county, and the population 50 and over is among the county's highest. So basically, it's a neighborhood of rich, old, white people.

I thought about this during a conversation I had today with a preschool teacher from Florence Avenue Elementary. She is the lead teacher in a class for students with autism. Her school is located between Inglewood and East Los Angeles in the 90001 zip code.

Just for comparision, I reseached the demographics of the school's neighborhood on city-data.com: the average adjusted gross income is $22,565; 35.6% live below the poverty level; 78% of the residents speak Spanish; 21% speak Engish; 45% are foreign born; and the median resident age is 24 years. So this Los Angeles neighborood is pretty much polar opposite of Pacific Palisades; it is populated by poor, young, Hispanic people.

The teacher was young and very enthusiastic about her job. She obviously loves her work and has been told she is the best preschool teacher at her school. I could tell that she really cares for her students. She even makes home visits on her own time to help the families, but there are many, many obstacles that she cannot address. Some of parents need behavior management classes to better cope with their child's behavior issues. Many parents do not speak English. She spoke of one family that was in crisis; the mother of her student has no family support, and the younger sibling is also showing sings of an ASD. Needless to say, this young Mom is completely overwhelmed and not coping well.

Instead of having the Westside Regional Center like I did, these parents have the East Los Angeles Regional Center and are not treated as kindly as I was by Westside. The teacher told me that the parents of her students are informed that the East LA Regional Center that no money is available and they should go to to the school district when their child turns 3. The teacher also mentioned that her school's administration was not as supportive as she'd like. So when these families try to get any services for their child from the two traditional avenues where I was able to easily get help, they find it difficult, and sometimes impossible, to access to services for thier child that they so deparately want and need. Add to this the California budget crisis which has severely cut monies to both the Regional Centers and the school district, and these poor families of color are really underserved.

Not only do these families have a more difficult time getting services, but it takes them longer and requires more doctor visits to receive an Autism diagnosis. According to the study "Ethnic Disproportionality in Students with Autism Spectrum Disorders" by Michael Morrier, Kristen Hess & L. Heflin, Hispanic and African American children were referred to special education at reduced rates, they received an ASD diagnosis at older ages than Caucasion children, and they required more vistis to health care professionals than Caucausion children in order to receive the ASD diagnosis.

What an incredibly sad situation. Being poor and having to struggle to support your family and make ends meet is stressful enough. Throw in a language barrier, a child with a developmental disability, and a lack of both access to and information about available support services, and this is a real recipe for disaster for this community in particular and our society as a whole.

I worry about these families because I know the difficulties they face. But they will have a much more difficult time finding ASD support services for their child than I did, just because of how much money they don't make and becuase they aren't white. I've been both wealthy and I've been low income. Needless to say, it's much tougher to care for your child with special needs when you don't have money. So if a family is poor, Hispanic, or African American, as if having a child with ASD was not difficult enough, these parents will have to work harder in order to get the same support for their child than it was for me.

I wish I had the answer or could solve the problem. But I'm in the middle of raising my own child with ASD, so I just try to keep focused on Jacob and hope everything I've implemented for him works. I only wish every family could be as fortunate as was in the journey to help their child. Empowering these families is the key, and the Autism Society Los Angeles is planning on addressing this issue with this school. More about this in a future blog.

Thursday, August 12, 2010

Public High School is soon to be Jacob's Reality

Jacob will soon be starting 10th grade at Culver High School, and he's not really concerned or excited about it. In fact, he doesn't seem to act like he cares much at all. He's typically pretty low in regards to his own internal motivation or enjoyment levels and anything outside of U Tube, the internet, movies, South Park, Family Guy, Steven Colbert and hanging out with his pets is something he considers to be a chore and not something that could be a potential source of fun. He's already made up his mind that High School is going to be boring. He's not happy about the 8AM start time and the homework that he'll have to complete each night. He has two buddies from his previous school that he regularly telephones and has over for sleepovers at our house, so new friends don't interest him. He thinks girls are ok, but he doesn't care about a girlfriend. So Jacob is totally at ease with the prospect of starting a new school.

Me, on the otherhand, not so much. Jacob's last couple of schools have been small. There were about 300 students at the non-public school that he attended for 6 years and only 10 (yes, that's right, I said ten!) at the private school that he attended last year and where I'm employed. All the kids at my school were younger and/or more impacted than Jacob, so he never developed any friendships. On the good side, I was actually able to see him the entire day, and it really helped strenghten our our relationship. I don't know how we could have done this without me being the school Principal and him being a student.

Over the summer, Jacob attended the Culver High special ed summer school, a modified version of the regular year: there were only 400 students on the entire campus, he was with only 10 other special-ed students, and they stayed in the same room for the entire day which ran 5 hours long. This went fine with no problems, but Jacob made no attempt to interact with any of his classmates. He told me he found the entire experience "a waste of time" as he likes to label anything that falls outside the scope of his limited range of interests.

So this, by stark constrast, is going to be a whole other world. Culver High's student body numbers over 2,100, and when I think about Jacob entering a campus so large, my head begins to spin. As we know, teenagers can have moments where they are wonderful and interesting creatures, however rare those moments may be. But many times, high school social environments are confusing and complex scenes in which to navigate even for the most typical of teens. These issues can be magnified tenfold for a child with any type of disability. If he doesn't fit in, Jacob might be ostrisized, bullied, victimized, or worse. We've all heard stories of teens who've kill themselves due to unbearable mistreatment by their peers. Will Jacob avoid punishment for being different? I have no idea, but what I do know is he'll either succeed or he won't. If he fails, we'll go back to the school district to ask for alternative enrollment options. I only hope that if we have to make this decision, it will be due to nothing severe having taken place.

So, I drop him off at 8:00am in just two weeks from this Monday. Half of me is terrified, while the other half is curious and optimistic. Let's hope that one day very soon the last two emotions miraculously morph into a relaxed state of being.

Monday, July 19, 2010

Please Don't Tell Your Child to Look me in the Eye

I remember when Jacob was diagnosed, one of the first services I implemented was speech therapy. Jacob was verbal, but he needed help in learning how to use his speech. Beginning at age 3 1/2, he was taught concepts like rhymes, antonyms, synonyms, and the basic usage of speech that he wasn't able to master on his own.  One of the areas his therapist targeted was Jacob's lack of eye contact, something common for children on the autistic spectrum. I was taught early on to constantly remind Jacob to make eye contact with anyone who conversed with him.

I witnessed a mom doing the same thing on Saturday with her young son.

Each month, the Autism Society and AMC theatres nationwide have a monthly Sensory Friendly Screening of a newly-released major motion picture. The lights are slightly up, the sound is slightly down, no previews or commercials are played prior to the showing, kids can walk around and parents are free to let their child bring food and toys into the theatre. It's a wonderful site to see a roomful of parents and children with autism enjoying a the latest kid-friendly blockbuster release at the theatre. Many times, parents express their thanks with words like "keep up the good work", and "I'd never be able to see an entire movie with my child without these screenings". I always love seeing parents totally at ease because their child can make noise or walk in the aisles without having to worry if anyone is annoyed. Remember, we're just miles from Hollywood - family outings to see the just-released big-budget kid-themed film seems like an essential element of the cultural landscape for every LA parent. For me, not being able to go to the movies with Jacob was one of the unfriendly reminders that Jacob had challenges. Most of my friends never think had to twice about going to the movies as a family, so I can only imagine how much fun this would have been for Jacob had these screenings existed 10 years ago.

Last Saturday, I was the representative from the Los Angeles Autism Society chapter for one of these monthly AMC/ASA screenings, and I spoke to a mom who was with her 3 year old son with autism. I saw them together a few minutes later, and I greeted the boy and asked him his name. "Miles", he said, though it was a little tough to understand. Mom gently repeated his name, and I said "Hi Miles, nice to meet you". We shook hands, I gave him a high five, and Mom and child turned to enter the theater. I said "Bye Miles, see you later". His mom stopped him, and said "Look at Susan, and say good bye".

I know Mom's intentions were good.  This was me with Jacob not too long ago. Not making eye contact is not socially acceptable, so I was told that Jacob needed  to learn how. I knew that when Jacob was cute and little, people wouldn't be so judgmental. But as he aged, this would become a problem - a teenager or adult who does not make eye contact is viewed as being disrespectful. Just as I often did with Jacob, Miles's Mom prompted her son to make eye contact. When Jacob was the same age, my fear was probably similar to hers. Neither of us wants our child grow up to be perceived as someone who is rude or inconsiderate.

Being a wiser person about the world of ASDs, if I speak with an adult and he has difficutly making eye contact, I would probably think he is on the autism spectrum. I'd be compassionate rather than judgmental. But most people don't think like me. So, take a moment to really think about the reasons for prompting someone to make eye contact. Put yourself in the mind of Miles during our interaction.

If Miles does not want to make eye contact with me, why is it beneficial to tell Miles to make eye contact if he has no desire to do so? If he doesn't feel the need to look at me, if there is no natural curiosity to read the cues from my non-verbal communication, if he has no desire to find out if I'm really showing that I'm listening or yawning because I'm bored, if he has no desire to share the experience of being congurent in our feelings and our thoughts, why would telling him to make eye contact further his interest? This would be similar to giving someone a tool without instructions on how to use it. Like telling someone to make scrambled eggs when they'd never used a stove. With instruction, the importance of the stove would be understood and making scrambled eggs becomes an easy thing to do. Once he's understood why the stove is important, the person's interest could be further sparked and could lead to the desire to make new and interesting discoveries beyond just cooking eggs.

So the question is why don't children with autism make eye contact? Because they don't know how to the handle constant changes that are required while interacting with someone. In order to have a reciprocal conversation, our brains use many dynamic skills all at the same time: we listen to the other person, we interpret their non-verbal cues and vocal intonations, and we reference our own past expereinces to formulate responses to new information. For us neureotypicals, the skills we've leaned in order to have reciprocal conversations are something that we developed naturally. For us,  most interactions throughout our day are positive and are conducted without much difficulty.

The wiring of the brain of a child with autism makes this type of neurological multi-tasking very difficult, and this makes having a reciprocal conversation an overwhelming and confusing experience.  It's like having the TV and the radio playing at the same time.  Turn off the radio and it's easier to focus on what the TV is communicating.  For a child with autism, take away having to interrupt the non-verbal cue of facial expressions, and it's easier to focus on the words being said.  This can help to make the experience of having a conversation less stressful.  Unfortunately, without non-verbal communication, you miss most of the context of what is being said by the other person which makes having a successful reciprocal conversation extremely difficult.  This is a big reason why people with autism like to dominate conversations on their topics of interest.  It's easier to talk about something you know a lot about than having to react in the moment about things you may know nothing about.

Prompting a child to do something for the sake of compliance does not facilitate a child's inner longing for self-discovery of their world. It doesn't foster a desire to connect to people outside himself. In order to encourage a child to expand their desire for curiosity, a parent needs to help thier child feel safe. A parent needs to help their child expereience new discoveries in an environment that is comfortable and not scary or overwhelming.  There also has to be a context for eye contact.  A child needs to understand that you look at someone's face to gather information, like knowing if they bored so you know it's time to stop talking or change the subject.  A skill taught without context is meaningless, so telling a child to look at someone's eyes when the child doesn't understand the reason does nothing to help him develop appropriate communication skills.

To all those parents who want to prompt their child to make eye contact, think about what your child will be thinking when he hears your request. Remember, he doesn't want to make eye contact; this is a tough thing for him to do. Your goal is help him feel secure enough so he won't feel so overwhelmed.  You want him to reference your non-verbal communication so he will include you in the conversation.  As I've mentioned before, the only program I know that directly addresses this issue is Relationship Development Intervention. Once the trust is established and the child doesn't fear the unknown changes in his environment, making eye contact during a conversation won't be such a scary thing for him to do anymore.

So, the next time you want your child to look you in the eye, make sure he knows the reason why.  Remember, eye contact without context is meaningless.  Your goal is not to have your child look at you for the sake of looking.  Your goal is to have your child look at you so he can get more information about your conversation.  And once your child has that desire to look you in the eye, he'll do that for others as well.


Saturday, July 3, 2010

The Teenage Years are Tough

One of the interesting things to emerge from my blog is that parents are emailing asking for advice on what to do with their own teens with Autism Spectrum Disorders (ASD). There are many families in crisis, and they all want to do what’s best for their children. They just have no idea what to do. Their child’s school isn’t equipped to help, it’s tough to find professionals that really understand the issues, and when they do, the fees for the services are usually really high. It can suck to be a parent of a child with ASD. You have this terrific kid but the all cool stuff is masked by his outwardly obnoxious exterior, and you have no idea on how to solve the problem.

I received this letter through the Autism Support Network (which is a terrific site with great resources). I was really moved by how tough it must be for this Mom to be a parent to her step-son, and how un-empowered she felt. I’ve changed the name of her and her step-son so I can honor their privacy, but I’m absolutely positive that this family dynamic is repeated in thousands, maybe millions, of families with a teenager with ASD across the world.

Hi Susan: Yours is an inspiring story. I am the step-Mom of a now 17-year-old Aspergers boy, Jack, and my story is not inspiring. On the contrary.

Jack’s birth-Mom was able to get him diagnosed at about age 6. He was enrolled in a small school for like-minded kids through middle school and is being main-streamed in High School. The residential transition goal set up by the HS are a half-way house or live with his Mom and for work skills to attend a vocational school. He has a very high ability in some subjects, Math and Science, but the aides do a lot of his homework for him. As I see, the family has done no training or help at home. Jack’s home life when his parents were married was very dysfunctional with each family member going into hiding to their own rooms with their computer or TV. We live a two-hour driving distance and we find it very hard to be of any real help. My husband has given up, and I can't do much without his support.

So, every for the 2-3 weekends a month that he spends with us, Jack plays video games 24-7. He is allowed to do whatever he wants, including not being called on rudeness to me and others. Jack has absolutely no interests outside of computer and TV, except an occasional involvement with gems, and has absolutely no friends. He lives in a dream world where all of his needs are met without any effort of his own. He has low academic skills, no work skills, no work ethic, and no sense of any need to take care of himself.

My husband and I are beginning counseling. Adding to this is that my husband is undiagnosed Aspergers, and our communication is very troubled. I couldn't find an available specialist in Aspersers for counseling in our area, so we are working at this time with a counselor with many years of working with blended-family couples. I have found an Aspergers specialist out-of-state who we might be able to see intermittently.

I feel horrible about myself, that I'm an unloving failure, and powerless. I feel I’ve neglected myself, as Jack is in driver's seat, and I'm the 4th wheel in the family. Sorry for this long rant!.  Anne

Wow, I thought, this woman is really suffereing. I know at some point, she was happy with her husband. She loved him and she married him thinking she could handle anything with his son even though she understood the boy had special needs. Unfortunately, no one, I mean no one, can understand what it is actually like to have a teenager with ASD until they themselves have lived through it. Especially if your child is “high functioning” or “Aspergers”, your child is very bright. Many times they are doing well in school. If they aren’t, it’s even more frustrating because it seems that if they just applied themselves, they’d be straight A students. What is wrong with my kid? Why can’t he just do what he’s supposed to!  Add to this the fear that they have no friends and they are difficult to get along with and you have a daily state of stress that is difficult and at times feels impossible to live with each and every day.

I’ve been there, and done that. Jacob is one of the smartest kids I know, but motivation about academics was always a challenge. I know now that Jacob had problems with reading comprehension, and the school that he that attended from third to ninth grade never identified or remediated the disability. In the eighth grade, his reading comprehension was tested at a fourth grade level, and this was only done because I requested an assessment for his IEP.  The problem was never figured it out in his five years of enrollment, and this school is a well-known for specializing in educating children with social communication disorders. I can only imagine how tough it is for this young man whose high school transition plan doesn’t even include a goal of living independently in his community after he leaves his educational environment. I sure don’t want my Jacob to live in a half-way house, and I definitely don’t want him to live with me or his father until either of us are dead.  I'm aiming much higher in my objectives for Jacob.

So here was my response.  This would be the same advice that I would give to any family with a teenager with ASD, and the teen is completely addicted to his computer, You Tube, video games, and DVDs as well as being unmotivated in school and is socially isolated and cut-off from his community.

Dear Anne: I really do feel for you. I can tell in your letter that you an extremely compassionate and caring person. You deeply care about Jack, but you don't know what to do to help. I can only image how frustrating all of this is for you to deal with on a daily basis. 

It's sad, but there are thousands, maybe millions, of young adults just like Jack all over the world. Due to no fault of their own, parents are greatly challenged with a child with ASD.  They loose their ability to be competent parents, and the child grows up to be the one in control instead of the other way around.  You mention your husband has undiagnosed Aspergers. I'm guessing that Mom may have some similar issues as well.

It is absolutely necessary to make your home as calm and tranquil as possible.  I'm happy to hear that you and your husband are in counseling and you're seeking counseling for Jack.  Chaos at home is not a productive or healthy environment for anyone.

Be sure you are taking care of yourself. I was a single mom with a young child with ASD, so I know how easy it is to let your child monopolize all of your time. Start by adding something small, like a 10 minute daily walk or reading before bed each night.  Do something you really enjoy each day just for yourself.  If you can afford it, treat yourself to a massage or facial or anything that makes you feel relaxed and rejuvenated.  Don't forget to take care of everything related to your health including appointments with the doctor and dentist. Exercise regularly, eat well and get a sufficient amount of sleep. As much as you want to correct your home issues, you can't be there for anyone if you haven't first taken care of yourself.

Keep in touch with your friends and family outside of your husband and children.  Schedule time to hang out doing whatever you enjoy doing.  I know life is busy, but make definite plans at least once a month to do something special together be it lunch, a movie, or a walk in the park.  If your gal pals can lend a supportive ear, that's great, but don’t depend on them to be a substitute therapist for you to unburden what’s up at home.  You want to spend quality time, so as much as you can, try to make this a place where you don't deal with or talk about anything relating to Jack.

For support, find a group of parents that you can meet on a regular basis.  Ask your current therapists for a referral of a parent support group in your area for teens with ASD or Aspergers.  You can also connect with the parents of students in Jack's classes.  Ask his teacher for the telephone numbers of his classmates with special needs.  Since you're 2 hours away, meeting for coffee once a month would be a good start. I did this when my son was in grade school, and I found it to be very helpful.

So what to do about Jack? Unfortunately, Mom sounds like she is overwhelmed so you won't be able to count on her. One of the first things to do, and this will be really, really hard, is to get Jack away from the electronics. Get him out of his room and doing stuff with his Dad and/or with you. Going cold turkey would be a complete disaster, so start by putting a limit on the amount of time that Jack spends on the TV or computer each day. Since this is his whole life, you'll have to give him a bit more latitude at first, but you definitely want to reduce the amount of time he's spending engrossed with electronics and more time interacting with people. 

You and/or Dad will also need to start donig anything with Jack.  Spend time together teaching him how to do things. Have him help around the house. If you have a washer/dryer, laundry is an easy one.  If you have a yard, mow the lawn, water the plants, and pull weeds. If you have a hose, wash the car together.  Cook dinner, walk the dogs, ride a bike, take up tennis. If you or your husband have a hobby or talent for something, you can spent time teaching this to Jack.  You mentioned that he has an interest in gems, so try to develop this interest with him.  You want to do anything that gets him involved with you and/or Dad and away from TV and computer.

In your role with Jack, you and/or your husband will be guiding him, and he will be your apprentice who learns from your wisdom.  If it is somehting that Jack has mastered, you can switch roles and he can guide you.  Finishing the activity, be it making dinner, mowing the lawn, or biking to the store, is not the goal.  You want to focus on spending time together and having Jack look to you for guidance and approval. You want to stay in the moment and have a positive, shared experience. It’s ok if some of these activities foster independence.  Cooking, cleaning, and laundry are all things he'll have to do for himself one day.

Expect a lot of resistance.  Jack will not like having his world challenged.  He'll probably call his Dad the worst parent in the world.  He may call you in appropriate names.  This is going to be a very hard thing to implement.  But remember, you are the boss.  You are in control.  You are the one calling the shots.  Jack is going to challenge to from  here to the end of time, but hold fast in your belief that you deserve respect for what you say and how you think.

The program I recommend, and that incorporates all of what I just mentioned, is Relationship Development Intervention or RDI. I've been doing it with my son. All I can say is if you put in the time, the program works, big time.  It's the core part of the curriculm of a school that I run, and I've seen children that are highly impacted with co-concurring conditions and non-verbal that are now starting to communicate. It's made a huge difference in the relationship with my son. Go to http://www.rdiconnect.com/ for more info.  The RDI program founders are Dr. Steven Gutstein and Dr. Rachelle Sheely, and Dr. Gutstein's latest book is The RDI Book.  Read it.  It will give you a tremendous insight into the way Jack's brain works, the reason for his behaviors, and a good explanation of the program.  What I really like about RDI is it helps parents look at the health of the entire family, including spouses and siblings and not only the parent-child relationship, so you'd be addressing all of the home and personal issues that I mentioned above.  It would be great if the Mom would be involved, especially since Jack is spending a majority of time at her house, but you'll have to work wtih what  you've got.  I do it without my son's father being involved, and it's been ok.  But I'm positive Jacob would be much further along if his father was on the same page at his home.

Best of luck to you. I know there is a lot on your plate.  It's not healthy to feel sorry for yourself, but sometimes its tough to understand the reason for the challenges that life hands you. I really urge you to check out the RDI program and buy the book. I think these are the best remedies to help your family in the long term. Take care and keep in touch. I'd like to hear how things are progressing.

Saturday, June 26, 2010

What I Believe and What I Know

I really enjoyed being Jacob's Mom when he was a small child.  I was fortunate that at the time, my business was sucessful and I was able to work on my own schedule.  We spent quality time together doing a lot of kid-oriented activities. Things changed when he was about 7 when the business started to tank. I’d soon have to find employment that allowed me to work full-time and to also still be Jacob's primary caregiver, and it wasn't easy. But in his early years, I had the luxury of being a full-time Mom and I loved it.

We had a lot of fun times – visits to the beach, the various parks in the area, Museum of Natural History, Los Angeles Zoo, Long Beach Aquarium, Legoland, Disneyland, Universal Studios, Magic Mountain, and more. One amazing vacation took us to Switzerland for 3 weeks, and Jacob spoke about it for years afterward. Because money wasn’t an issue, I could do these things and focus solely on Jacob. Though his behavior could be difficult at times, I remember that we shared a lot of positive experiences and happy times together.

Jacob was an incredibly beautiful baby. Not that I would have loved him any less had he not been, but he really was the most gorgeous infant. Big blue eyes, golden blonde hair, the sweetest face ever. Even though he’s now a teenager and taller and stronger than me, he’ll always been my little boy. The early years went by quickly, and I don’t regret one moment of my time watching Jacob grow up. His diagnosis hasn’t changed that. It hasn’t helped me to love him more, but it certainly has given me a determination to see that he grows up to reach his fullest potential. Over the years, I think I’ve done a good job helping him to do that, but I’ll never stop trying until I know he’s happy and living on his own.

So with that said, here are the things that I’ve come to know and believe in my journey with Jacob through the land of autism.  Even though Jacob was considered "high functioning", I still believe that all of these apply to any child diagnosed with an autism spectrum disorder.

My son has a disability, the disability does not have him. Saying Jacob is autistic sounds like that’s all there is to him. Saying he has autism puts it in better perspective. Autism doesn’t define him, it only offers a partial explanation why he is the way he is. It helps to make sense of his limited interests, why he insists on telling the same joke over and over again, or why he rejects social settings when it’s with people he doesn’t know very well.

A child with autism can teach you many things: how to remain calm even though your buttons are being pushed beyond what you thought were your ultimate boundaries, how to love someone more than life itself even though you might have a difficult time realizing that particular moment, and how to remain composed when your child has a complete meltdown in public. You learn more patience than you thought you could ever possess.

One of the most important things a parent can do is to accept their child as they are instead of trying to change them into something they are not. I never felt sorry that Jacob would never be the child I wanted him to be, and I always tried help him overcome his challenges.  Overall, I think I've done a good job.  He's now 17, and he has so many strengths.  He has a good sense of humor.  He has an excellent memory.  He's great at building models and putting together puzzles.  Growing up, his behaviors could be a real pain, but I tried to focus more on what was special about my son instead of the difficult behaviors.  If I had let the not-so-good stuff get all of my attention, I'm sure I would missing out on the terrific young man that he is today.  Sometimes in the middle of a challenging incident, it's difficult to remember that your child has strengths and exactly what those are.  I think as a parent one of the most important jobs we have is allowing our children the space to make these strengths shine.  With Jacob, sometimes it was next to impossible to have the patience to do this, but I can honestly say having to deal with Jacob's disability has increased my ability to accept others regardless of how different they may be.

We are all people, disability or not. Everyone has distinct likes and dislikes. Everyone has a desire to love and be loved. Everyone has a need to have fun and enjoy the good things in life. Just because someone has autism, doesn’t mean they’ve lost their humanness.  Just because they are non-verbal or they flap their hands or walk on thier tip toes just means they are interpreting the world in their own way.  People that are mentally impaired have feelings just like you and I.  Everyone deserves respect for the person that they are, not be judged for the person they are not.

Children with autism are not sick or diseased. They are not victims. They have a neurological disability for which they need remediation. Some individuals with ASD have co-concurring conditions that make them medically fragile or extra sensitive to their environment, and each of these co-concurring conditions needs to be individually addressed, treated, or remediated. Seeking a cure for Jacob because he’s a victim of autism would imply that there is something terribly wrong with him. In reality, the reason for Jacob’s behavior is the result of his brain not being neuro-typcially wired.

Treating co-concurring conditions, like dietary sensitivities, can help mitigate behavioral issues. For example, if your child is non-verbal and has a wheat allergy, he might get a stomach ache when he eats something that contains wheat. Because he can't tell you in words that his stomach hurts, he'll communicate his displeasure by being upset. This isn’t due to his autism.  It’s because he has a pain in his stomach and the only way he communicate is through his behavior. Take out the wheat and the upset behavior caused by the pain in his stomach will end.

For children on the autism spectrum, the world is often a confusing and overwhelming place in which to live. They don't know how to act with their friends, they don't understand what is happening in the classroom, and they have a difficult time with their parents and siblings. They may have a sensory issue that makes wearing clothing or shoes very uncomfortable. They may have a problem with communication and they are constantly frustrated when they have problems expressing their thoughts and feelings. Think about this: how would you feel if every moment of every day you felt incompetent, misunderstood, or unable to navigate in your environment?  As much as it's difficult to be the parent of a child with autism, just think about how hard it is for a child whose world is constantly confusing, scary, and unpredictible.

The eye on the prize for every parent is a son or daughter that becomes a young adult with a meaningful life that is suited to their abilities.   The definition of a meaningful life will be unique to each child as they become a young adult. Some may be able to live on their own, and some may need lifelong assistance.  Some may be able to attend college, and some may be more suited to learn a trade.  I think all parents should aim as high as possible in the goals for their child and adjust these accordingly.  Whatever the ultimate outcome, any and every treatment, therapy, and intervention needs to be done with these goals in mind, always and with no exception. Time and money are limited resources. Be sure to use them wisely.

Parents need to have experiences with their children. Sharing time with Jacob is something I’ve never regretted. Even though his behavior could be at times completely annoying and exhausting, I know that our time together was one of some of the best time I ever spent for both him and me. Shared experiences build positive memories.

Most importantly, don't give up hope.  There were many days that I wondered about Jacob's future. Would he ever have friends?  Would he graduate from high school?  Would he attend college?  I still have these thoughts, but I am much more positive that Jacob's future than ever before.

So for all the parents of a child with autism, no matter what your child's diagnosis, whether he is high functioning or low functioning, verbal or non verbal, always keep in mind that you are the key to his success.  The future of your child is at stake.




















Sunday, June 13, 2010

Autism 101: Interview with Dr. Sandra Kaler

This interview with Dr. Sandra Kaler was conducted in 1999.  She was the first doctor to assess and diagnose Jacob, and her support was invaluable.  She directed me towards Los Angeles Unified School District and the Westside Regional Center for support services that were a tremendous help for Jacob.  Today, the California state budget is in crisis, and many of the services that were  given to Jacob back then may no longer be available.  But that's a blog for another time.

Dr. Kaler is a developmental and child clinical psychologist who lives and works in Pacific Palisades, California and has had her own practice since 1992. Dr. Kaler has been a resident of Pacific Palisades since 1984 where all four of her children attended school.  Previously, Dr. Kaler was a nursing instructor at the University of Alaska, Anchorage and UCLA.

In this interview, Dr. Kaler gives a thorough overview of Autism, and should be of help to anyone wanting to learn more about the subject.  I did this interview over 10 years ago, and in rereading it, I remember how much I learned about ASDs in my conversation with Dr. Kaler.  Some of the information has been updated since I originally spoke with Dr. Kaler; where I thought appropriate, I added my comments in parenthesis. 

Susan Levy (SL):  Dr. Kaler, What is autism?

Dr. Sandra Kaler (SK):  At its basis, autism is nothing more than a social communication learning disability. It is a behaviorally defined syndrome. There is no test you can take to determine whether you have Autism or you don’t. But there are patterns of behaviors and ways of approaching the world that, if a person demonstrates enough of these characteristics in enough situations, we say he falls on the spectrum of autism. Children at the high end of the spectrum are more like typically developing children than they are like the prototype, which in most peoples’ minds is Rainman. It is a wide spectrum, and each person on it is affected differently.

We do know this disability is on the rise. Fifteen per 10,000 people used to be considered the norm. Now it is one in 400. And if you include the milder forms of social communication disabilities, like Asperger’s Syndrome, it is closer to one in 200. That is the latest statistic around the world for every socio-economic group and every ethnicity. (As of this date, the statistic is now 1 in 110 individuals.)  In the United States, autism is currently the third most commonly diagnosed developmental disability. There are 500,000 people, adults and children, with autistic spectrum disorders (or ASD). From 1993 to 2003, California alone has experienced a 273% increase in new cases. We are talking about a very wide population.

SL:  What is Asperger’s Syndrome and how it is related to autism?

SK:  Some professionals think Asperger’s is a different disorder than autism. Others feel it is a milder form.  With asperger’s syndrome, the difficulty for the individual is in social interactions.  There also may be a restricted repertoire of preferred activities and behaviors that the individual likes to engage, but typically there is not a language delay prior to age three.

The best quote I’ve heard about Asperger’s Syndrome is: “Children with autism live in their own world.  children with asperger’s syndrome live in our world, but they live in it on their own terms.”  Children with asperger’s can be very rigid and are frequently misdiagnosed as having obsessive compulsive disorder. They may be hyper-verbal, and they may love to talk, but the quality of their speech is a little pedantic, like the brainy professor. They go on and on about their own area of interest, but they have difficulty taking the listener into perspective.

SL:  How does an autism appear?

SK:  There are primarily two presentations of autism. In the first, children show signs of the disorder as early as within the first year. There is something noticeably different about their social relatedness before age one and it persists.  From ages 18 to 24 months, it becomes more pronounced because we expect much more of them in terms of relating to others. Nonetheless, it is always there.

There is another presentation where children appear to be developing normally and regress between the ages of 16 - 24 months. We understand this from our research on how the brain works. At two years of age, the higher parts of the brain take over social communication from the lower brain regions. For a while, the lower regions are no longer being used but the higher regions haven’t yet taken over, so you see a lag in development. During this period, these children will can lose previously developed skills such as language. They become less socially related. As the child’s brain develops, particularly with intervention, the child can many times regain these skills.

Unfortunately, people have started looking for a single causative mechanism when there doesn’t appear to be just one. There may be multiple causes, but we don’t know exactly what they are. For example, for children between the ages of 18-24 month, there may be changes in the family, like the birth of a sibling, parents separation or divorce in the family, or an illness in the familys.  There is an ongoing debate about the MMR vaccine or the DPT shot given at 18 months and this as a cause. Very often parents blame themselves or believe it is something in the environment causing a problem, when it is really just the way in which their child is developing.

SL:  How does ASD manifest in a child's behavior?

SK:  Classic autism is comprised of three significant aspects. The first is a child or adult who has what is classified as a qualitative impairment in reciprocal social interaction. That’s a fancy way of saying there is something different about the way the individual approaches social interactions. And at different ages, it shows up in different ways.

A very young child may not be playing at his developmental level. A child might demonstrate basic intelligence about objects, but, when put with a child of the same age, shows no social interest. This behavior can show up even younger, as early as twelve months. The child won’t be playing patty-cake or peek-a-boo. There is something different in the quality, not necessarily the quantity, of the child’s social interactions, first with parents, then with children their own age.

The second aspect of autism is a delay in language develop.  It is not just that the child talks later, but there is also a fundamental difference in the way the child communicates. By twelve months of age, a typically-developing child will make it clear that he understands what you are saying although he may not yet speaking. By eighteen months of age, a child usually has a number of words in his vocabulary.  In contrast, a child with autism may memorize words from a videotape and say them wholesale. He may repeat back to you what you have said, but the child doesn't use the words so they can have a reciprocal conversation. They talk about what they want or what the want to talk about, but they don’t use their words communicate with other people.  Their non-verbal communication is also different. Many children with autism don’t point, gesture or bring things to share with you.

The third aspect of classic Autism is a restricted repertoire of activities and behaviors. The child doesn’t play in a broad way with other children at their developmental level. They might become obsessed with one thing. A common example is a little boy who becomes obsessed with trains. He loves trains, he collects trains, and he lines trains up.  This special interest can be with any object or toy, like a car or blocks.

It is important to remember that this is not a degenerative disorder. There are a few rare neurological disorders that are degenerative, but, as a whole, ASDs are not. The children don’t really lose skills, but, over time, it becomes clearer that there is a difference between how a child socially interacts compared to a typically developing child. And depending on the severity of the disorder or the sophistication of the parent or preschool, it may not be picked up until the child is much older.

SL:  Are there any age-related behaviors that parents should notice?

SK:  There is a good book about normal child development called Baby Steps by Claire Kopp. Although she isn’t specifically writing about autism, she offers wonderful pointers about when to seek help.

By the end of 18 months you should have your child evaluated if he or she:
- Isn’t interested in parents or toys
- Doesn’t remember routines
- Doesn’t understand words
- Doesn’t show maternal attachment

By the end of 24 months seek help if your child:
- Isn’t imitating you or showing imitations, i.e., doesn’t play patty-cake or peek-a-boo
- Isn’t playing functionally with toys or explores a toy but doesn’t interact with it, i.e. picks up a toy phone but doesn’t put it to his ear
- Isn’t showing any pleasure at what he can accomplish

I would add: an 18-24 month-old who doesn’t bring you something out of the sheer pleasure of having you look at it, not just bringing you something so you can do something for them.

In my practice, I see many children at four or five when they enter preschool. The parents notice that their child is a loner, preferring to go off on his own rather than play with classmates. It is alright to be an introspective person or have your own agenda to a point. But the reason this child plays by himself is not because he has a preference for doing things alone.  It's because he doesn't know how to engage in reciprocal play with his peers.

I see many higher functioning children when they start kindergarten. At a preschool with discovery-based learning centers that allow children to direct their own playtime, the child with autism may not yet stand out. This is particularly true for children with asperger’s syndrome who can repeatedly choose the same learning center where they excel. The move to kindergarten forces the child to expand their repertoire of activities and behaviors, and they may not make the jump. Parents come to me with their kindergartner saying, “There is something different about my child, but I’m not quite sure what it is.”

I’m now seeing more and more children at age ten or eleven. Many times, a child of this age is misdiagnosed as having ADHD because it appears that he isn’t paying attention. No one ever picked up that he wasn’t playing with other children. It wasn’t because he didn’t want to play.  It's because this child really didn’t know how. When I make a diagnosis, I go to the school and assess the child during structured and unstructured time. In class, this child might be right on task and able to do the reading, writing and arithmetic, but at recess and lunchtime he’s wandering the playground or sitting in a corner. By now the child is unhappy and has no friends. This is one of the saddest presentations. By this age, his self-esteem has been severely impacted, and it is sometimes very hard to help him. We can teach such children new skills, but many times they have experienced years of feeling lousy about themselves due to not being able to fit in with their peers.

SL:  What other types of behaviors are often displayed by children with Autism?

SK:  Certain types of behaviors displayed by children with autism are also displayed by neurotypically developing children. But instead of the behaviors such as hand flapping, walking on toes and repetitive jumping or rocking tapering off, they persist.

Children with autism may have an abnormal response to sensation. Some children with ASD are extremely sensitive or under sensitive to sound. Parents sometimes have difficulty reaching them. The children don’t pay attention or they seem to ignore voices. Sometimes children with autism are sensitive to textures. They don’t like the feel of grass on their feet or Playdough or sand on their hands. All children go through periods of being more or less sensitive to stimuli, but it is more pronounced in children with autism.

SL:  How do you compare other brain dysfunctions, such as attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder or bipolar disorder to autism?

SK:  The current thinking on ADD and ADHD is that the chemicals in the lower part of the brain need to be sent to the frontal lobe to help a person focus. In children with ADD or ADHD, the chemicals aren’t getting from one part of the brain to the other. Medications such as Ritalin and Dexedrine are used to help get these chemicals to help correct this. Although some children with ADD or ADHD have social difficulties, others are extremely socially related. They are just impulsive, hyperactive, have motor restlessness or trouble sustaining attention. ADD and ADHD are very different disorders than Autism.

A person can have autism and ADHD. It is not true that you can only have one or the other. There are children with autism who go through periods of intense distraction or hyperactivity, and medication does calm them down. It is hard to know whether they have ADHD or are going through a phase. We do know that approximately 50% of children with ADD or ADHD will outgrow it. It is quite possible that, as the brain develops, the chemicals get to the correct area of the brain on their own.

Obsessive compulsive disorder is often confused with autism. Children with autism like structure. They like everything the same. It organizes their world. They do things that a typical person might see as obsessive compulsive. In fact, true obsessive compulsive disorder is having thoughts you can’t get out of your head or actions you can’t keep yourself from doing even though you don’t want to do them. Someone with obsessive compulsive disorder will say, “I know this is crazy, but I keep doing it anyway.” Someone with an ASD will say, “I do this because it calms me down. It feels good to sit in the same chair. I want to the same things, the same rituals.” Autism is different from obsessive compulsive disorder, and many times people don’t realize it.

There is a higher incidence of autism in families where one family member has been diagnosed as having bipolar disorder or manic-depression. We don’t know why because these are different disorders.

In children with autism, particularly asperger’s syndrome, 84%, are also diagnosed with anxiety disorders. These children aren’t necessarily born anxious, but if a child is having difficulties understanding social information, if people are talking to each other with their eyes and the child can’t read what they are saying, the child will become anxious. The anxiety is a result of the underlying social communication problem.

We know that there is a high incidence of depression in children with autism. Adolescence is a more challenging time because most children at this age want to be part of the group. Children with autism have brains that work differently, and they look at the world in a different way. They want to fit in and often they don’t. These children are often diagnosed with depression or anxiety as a result of their disabilities, but the underlying issue is how they view the world and how they approach social situations.  Parents should not lose hope because it gets better. Early adolescence remains an especially challenging time.  But we find that people with Autism do improve at the end of high school and into college because, at that point, it is okay to be a bit of an individual.

SL:  What causes autism?

SK:  We don’t know what causes autism so we cannot cure it. But there are different areas of the brain that seem to be implicated and are currently being studied.

One area of study is the development of the brain stem in midbrain. Research on children born in the early 1960’s whose mothers took Thalidomide during the third week of gestation shows that there is a very high incidence of autism in this group. This leads us to think the damage is done very early on in utero when the brain stem is forming.

The right side of the brain is also being studied.  The right side of the brain processes social memory, social experience and emotional understanding. And there is some hint on certain neurological tests that this is the area being affected. While children with ASD have good left-side functioning, which allows them to process step-by-step and ultimately to master language, they may be under-using the right side of their brain and this causes some social issues.

Here it gets complicated because children with classic autism many times do well on tests of right-sided brain functions. They tend to do well at putting puzzles together. They have excellent visual memories. They will tell you when you are driving in the wrong direction. These are right-brain functions. In contrast, children with asperger’s syndrome test differently. They have more problems with visual/spatial processing and their sequential or step-by-step processing is more highly developed, which is a left-sided function.

There is another theory based on autopsy findings on brains of children with autism. These brains are bigger and heavier, and some researchers theorize that they contain extra neutrons which at times bounce around and interfere with the brain’s processing. This would explain why on some days these children are easier to reach and that probably, on those same days, the neutrons are traveling straight through without interference.

There is also genetic research being conducted on families. We know in about 10% of cases we can find a clear autistic genetic linkage back to a family, but in 90% of the cases we can’t.

Environmental toxins are also being investigated. We don’t know why, but more and more children with autism are showing up in clusters. There is no conclusive evidence to suggest that the environment is a contributing factor, but there are towns where it is showing up more often.


SL:  What about the theory that vaccines cause autism?

SK:  Right now, the current opinion is: let’s look at this. Parents have to be careful and not think that there is an answer to everything. This is not like Lorenzo’s Oil. Hoping that we’re going to find a single deficiency that will lead to a cure is not a realistic expectation.

It is bad science to use any correlation as causation. We will use the vaccine theory as an example. If you randomly compared two groups of parents, one whose children had autism and another whose children didn’t, you’d find the same incidence of the vaccine. In other words, if you asked the parents in both groups how many of their children had a DPT or MMR shot at 18 months, all the parents would raise their hands. If you asked the parents of children with autism how many of their children showed the first signs of the diagnosis after the shots, half the parents might answer in the affirmative. You could conclude that the incidence of autism after the vaccine is 50%. In contrast, if you asked the parents of children who didn’t have autism how many of their children developed the disorder, none of them would answer in the affirmative. Then the incidence would be 0%. As you can see, this is not a correct representation of the facts.

SL:  The term pervasive developmental disorder (PDD) is used quite often. How is it related to autism?

SK: It is complicated as to whether the whole spectrum is autism or the whole spectrum is PDD, and I think it has caused a lot of confusion in the Autism community  I conceptualize it as an spectrum disorder and term ASD is most commonly used now. The term PDD comes from the DSM IV, the book that psychologists and psychiatrists use to make diagnoses. The book lists pervasive developmental disorders, then breaks them down further into different types of pervasive developmental disorders.

I think PDD is on the autism spectrum, and a majority of the autism community recognizes PDD as falling under the ASD umbrella.  In the perspective of advocacy and services, it is important to view autism as a continuum disorder because the underlying factor is all of these diagnoses are the same thing.

SL:  What types of therapies are available for children with ASD?

There is probably a “cure” a week for this disorder. When parents are told that their very young child has a life-long developmental disability for which there is no cure, they are sitting ducks for any kind of treatment that comes down the pike. It is extremely important for parents to become educated consumers of available treatment and therapies.

The only course of action that has been proven to work is a structured, multi-disciplinary, age-appropriate, developmentally appropriate educational program. We know that interventions need to be intensive; we typically recommend 25 to 28 hours a week from the time of diagnosis, even as early as age two. Programs need to be individualized, but they don’t necessarily need to be one-on-one. Educational programs need to be appropriate for each particular child, taking into consideration where the child is socially, where the child is in language and where the child is in play. This is never a one-size-fits-all situation. Parents must utilize the best available resources. As a group, children between the ages of two and four who receive the type of intervention described above do better as a group than children who do not receive this kind of intervention.  (I would add that these interventions need to focus on the development of dynamic life skills, but I will go into more detail about this topic in a later blog.)

There are many families who do not come to understand that their child falls within the autism spectrum until the child is over the age of four. But parents should not think that the window of opportunity to help their child has closed at this point. They should not conclude that their child’s brain has formed by this time and that is the end of it, because it’s not true. We know from longitudinal studies of children with autism at UCLA over the last 30 years, that they continue to make gains right through adolescence and into early adulthood. It is incorrect to think that if a child with autism doesn’t receive appropriate intervention by age four he will never improve.

Identifying what each child with autism needs is the key. Each child requires a program specifically tailored to his or her needs, and there are many available therapies from which to choose, including audio-integration therapy with earphones to swimming with dolphins. Then there are more relation-based therapies, like Floor Time. There is also sensory-integration therapy.  Fast Forward is used for children with auditory processing delays. Then, too, there are different kinds of auditory processing problems. When I test a child, it is sometimes clear that their auditory memory is an area of strength, so Fast Forward would not be an appropriate therapeutic choice. No single therapy is a one-size-fits-all phenomenon, and that is why parents must choose therapeutic options with caution. When obtaining services, parents should look for therapies that are most appropriate for their child at that particular time.

The younger the child, the more plasticity the brain has. My feeling is that we should jump in at the first sign of ASD and start intervention. There are professionals who feel that labeling a child as autistic at a young age may be not only painful for parents to hear but may also have implications for the parent/child bond. I truly respect this view, but I come from another perspective. It is so clear from the literature that early intervention is the best hope for children with autism that I think it is important to name it and begin treatment as early as possible.

SL:  How can a child learn social behaviors that they don't intuitively have?

SJ:  Because children with autism have brains that work differently than brains of typical children, they must be taught differently. Parents should not assume that their child will pick up social skills by osmosis.  Children with autism need specific instruction on how to make eye contact, read social cues, play and interact appropriately. They must be taught in a step-by-step manner. In some ways social skills for a person with an ASD is a disorder of meaning.  It is not that children with autism lack social skills, but that they may not understand why they should bother using them. Once they understand the reasons for a specific behavior, they can be taught to use social skills appropriately so that these skills become part of their repertoire.

SL:  Can autism affect academic performance?

SK:  Autism is very different from intelligence. There are some people with autism with genius level IQs who are functioning at grade level in school, but they are unable to appropriate process social/emotional interactions. It is true that half of the children with ASD will ultimately fall into the mentally retarded range.  But some children with ASD are able to excel in school with high grades.

SL:  How can a child test to be academically gifted and also have learning disabilities that negatively affect the child academically?

SK:  A learning disability is a disorder in one of the processes of learning.  Children with ASD may also have some deficits in the processes of learning academic subjects.  For example, some children may have auditory processing delays and need to be taught strategies around processing language. Many children have difficulties with word retrieval.  They need help not only with word processing and language comprehension, but they also need specific help with expressive language.  Many children with asperger’s syndrome have a disorder with simultaneous processing of visual and auditory material. They may also have difficulties with handwriting which may result in motor integration delays. On the other hand, visual/motor integration is an area of strength for many children with autism, so the exact areas of weakness much be identified and remediated.  Each child is different.

While the underlying issue with autism is social communications, there can be other learning disabilities that need to be directly addressed within an academic setting. This becomes a problem if your child’s school treats all children with autism as though they have the same needs. There are some  who don’t test as having a learning disability in any traditional academic area. Their only “learning disability” is in understanding social experience.

We are lucky that the elementary schools in the Pacific Palisades have wonderful support systems for children with special needs such as Autism. The school psychologists and resources teachers really understand the needs of children with ASD.

SL:  What should parents do if they sense there is a problem with their child?

SK:  They should take their child to somebody who is familiar with autism. In California, the Regional centers are a good source for parents, as they will evaluate your child at no cost.   If you want to take the private route there are other developmental psychologists, such as myself, and there also developmental pediatricians. Each one tests a bit differently, but they certainly have the knowledge to make a diagnosis. In Los Angeles, there is the Autism Clinic at UCLA. If their child is in preschool, before seeking outside help, parents should ask their child's teacher if there is something different with social interactions, and if so, request a professional referral. Unfortunately, many pediatricians have been much slower at identifying ASDs.

In terms of language, the typical two-year-old has a vocabulary of 200 words. Many parents have been taught that, particularly with boys, children talk at their own rate. But if your child has a vocabulary of significantly less than 200 words by 24 months and doesn’t use the words communicatively, at the very least have a speech therapist do an evaluation. A majority of my referrals come from preschool teachers and speech therapists.

SL:  Is there anything you would like to add?

SK:  The autism community has banded together to push this information and advocate for itself. Just as we have learned that there are many famous people in history who have had psychiatric disorders, we’re now starting to understand that there are many famous, accomplished people who have autism.

Parents need to hold very clearly in their minds that all we’re talking about is a developmental disability due a difference in the wiring of the brain.  Just as we understand that dyslexia is a learning disability, we know that people with dyslexia can learn to read, they just have to be taught differently.  Parents should remain positive and hopeful and know that their child with autism can improve and make progress. We know that over time a larger and larger percentage of children with autism are functioning appropriately in the community. Even though navigating the world for their child with autism can seem really scary, parents have to keep in mind that there is much hope and that their child will develop at his or her own pace.