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.

Thursday, June 3, 2010

Welcome to my World!

Hello to everyone out there!  Isn't it a wonderful day in the neighborhood.  It can be, but many times it's not when you have a child with autism.

My own journey in the 'hood started in April 1997.  Jacob was 3 1/2 and during a visit to the doctor, I heard the words "your son has Autism".  I remember like it was yesterday, and it was completely unexpected.  Jacob didn't have any glaring behavioral issues that I had noticed, but he had been hitting other children at his new preschool so the teacher suggested psychologist Dr. Sandra Kaler for an observation to see what was up.  I thought I would be receiving recommendations on behavior modification.  I wasn't expecting a diagnosis.  But a diagnosis is what I got and little did I know that I was entering a new and challenging world of which there would no be turning back.

In 1997, Autism wasn't the disability du jour.  It wasn't like it is today when just about anyone you meet knows someone with the disability.  Today, I guarantee you that in a room full of any number people, if you asked anyone to raise their hand if they know someone with ASD (short for Autistic Spectrum Disorder), most, maybe even all, in the room would.  It seems like Autism is everywhere!

In 1997, my only real Autism reference was the movie "Rainman".  Jacob was nothing like that.  His gross motor skills were were always on cue and age appropriate.  He talked late, saying just a few words at 18 months and finally using his language around age 2 1/2 (though I now know that Jacob was only using his words for his wants and not because he was trying to communicate), but Jacob's pediatrician never thought it was a problem.  And he was married to a behavioral pediatrician, so I would have thought he would have at least made a referral for a consultation before Dr. Kaler's diagnosis when Jacob was 3.  There were a few minor things that I'd noticed but never concerned me.   Instead of watching the magician or listening to the musical entertainment at birthday parties, Jacob preferred to play by himself in the host's bedroom.  I had to constantly monitor him in public because he would easily walk or run off without me.  I now look back on his developmental milestones and I can see there were signs.  As the saying goes, hindsight is everything.  But he was my first (and it turns out to be my only) child, and I had no reference to typically-developing childhood behavior.

Fast forward 13 years later.  He's now a typical teen in many ways.  He's a tall, nice looking young man though he still needs some prodding to properly shower and wash his hair, which is typical for a lot of teenage boys.  I've been working with a consultant for about a year and a half in a program called Relationship Development Intervention (or RDI - there are literally hundreds of initials in this world; it's kind of like it's own language, let's call it autispeak) and this has greatly helped improve our relationship.  He has some friends, not the type that call him often to make plans to do stuff, but he has a couple guys that he enjoys spending time with.  He has typical (thought limited) interests like movies, You Tube, Yugioh, and video games.  All in all, he's doing fairly well.  But the statistics for young adults with autism isn't great, so I'm working very hard to be sure he becomes a success story.  Time will only tell how well I have done and he will do.

So here I write about a world of which I have come to know very well.  And I have to say, and it may sound strange, that it has enriched my life in ways I never imagined.  I've met may wonderful families.  I've found that more times than not, that if parents are dedicated to their children, a disability will bring out the best in the Mom and hopefully the Dad too (though I mostly met Moms doing the work with their kids when I was out there with Jacob).  I came to appreciate a lot of things in life that I may not have valued quite so much if I didn't have a child with a developmental disability.  It influenced my employment choices, first as a behavioral consultant (which is a fancy word for a one-on-one aide in the classroom) and now as Principal of a small non-profit private school that incorporates the RDI program into it's curriculum.  None of this would have happened without Jacob.  If someone had asked me before he was born, "Would you like to have a child with a neurological disability that will last his entire life and will require countless hours of intervention and amazing amounts of money", I would definitely not have said "Sure, sign me up".  But I don't regret one moment of my life with my son.  In some ways, he has taught me more than I will ever teach him.

So, if you're the parent of a child with an ASD, you are definitely not alone. The Centers for Disease Control estimates that the incidence of ASDs in the general public is 1 in 110 individuals , so you there are plenty of families experiencing similar challenges.  You are a member of a community of Moms and Dads with the same responsibilities and worries.  For most parents with this responsibility, they don't know what they need to do or where to go to support their child.  It's a responsibility that is daunting, and scary, and exhausting, and overwhelming all at the same time.

For a long time, I've wanted to write about my experiences and what I've learned in the world of Autism.  I guess it's a desire to share my knowledge and help educate others so they can better help the people in their life with ASD.  I'm so much wiser now and my wisdom is something I wished I'd had 13 years ago.  If my knowledge is something that will help in anyway for anyone, then I know that the time I spend blogging is well worth it.